personal story — Invisible Disabilities Association

Don’t Judge by Appearances

February 5, 2013 by Wayne Connell 10 Comments

By Wayne Connell, Founder and President of the Invisible Disabilities Association

Have you ever seen someone get out of a car parked in a space reserved for people with disabilities, who did not LOOK disabled? Did it make you feel very uncomfortable or even upset? Did you let them know of your disapproval by giving them a dirty look or yelling at them?

Well, you are not alone. Many people are very disturbed by the sight of a seemingly mobile person taking the space of someone who is truly in need of it. After all, we want to protect the rights of people for whom these spaces are reserved!

However, in our efforts to help those who deserve these parking spaces, we actually may be hurting someone who has a legal right and a legitimate need to park there. How can this be true, you ask? Isn’t it obvious who does and who does not have a disability?

Let me share the following story about my wife, Sherri.

It was a weekend afternoon, and Sherri wanted to head to the department store to pick up some items. She knew that driving would be tough enough, but she felt spending time with her niece would be worth the difficulty of the trip.

Sherri and her niece pulled into the store parking lot, and she drove around until she found an accessible spot near the front. Sherri pulled out her accessible placard and placed it on the back of the mirror. She then proceeded into the store with her niece to shop.

Once inside, they looked for an electric motorized cart. They located one and proceeded around the store. Of course, being in her late twenties and looking much younger, Sherri would elicit stares from people wondering why she was using the cart. Some even wondered out loud, especially children who would point and ask “Mommy, what’s wrong with her?”

Why anyone would ride one of the store scooters unless they really needed it is beyond me. Sherri’s scooter at home goes 8 miles an hour and has head lights, tail lights and a headrest. The mall carts crawl along slowly, and everyone stares at you.

Sherri and her niece finished up their shopping and returned to their car. Sherri started the car and looked in the mirror and noticed a police car with its lights flashing right behind her, blocking her in. There was an immediate knock on her window. Startled, she rolled down her window and an officer stated that she was not allowed to park there, because she was not handicapped.

Sherri said that the placard was hers and she handed the officer her license, her placard registration and a multiple sclerosis (MS) card. Sherri mentioned that she had the right to park there, because she was disabled with MS and had gotten approval from her doctor and the motor vehicle department.

The officer replied, “I don’t care how many multiple problems you have, you can’t park there. I saw you walk inside and back to the car, and you looked fine to me.”

After about 10 minutes of trying to explain her disability to the officer, Sherri started to get quite frustrated. She then asked very politely for the officer’s name and badge number, and if he would please move his car. Of course, her nervous system started to work overtime and her brain went into fight or flight mode. Luckily for the officer, he said he would move his car. Then he stated, “See those people over in that Cadillac, they are not handicapped either.”

The conclusion of the story is that the officer was eventually reprimanded for the way he was hassling people who had the legitimate right to park in accessible parking.

The general qualifications for accessible parking spaces include those using wheelchairs, walkers, crutches, canes and assist dogs. Nonetheless, most of us do not realize they also include certain impaired functions of the heart or lungs, as well as conditions which are worsened to a specified impairment by walking a certain distance.

People with a variety of disabilities may qualify to park in these spots. Moreover, not all impairments are readily evident to the onlooker. Because of this, we refer to conditions which cause debilitating symptoms that are not so apparent from the outside as “invisible disabilities.”

There are millions of people who are forced to contend with serious illnesses, injuries and circumstances, which have left them with mountains to climb every time they take a step. Most people do not realize a person can have hindrances on the inside, which may not be visible on the outside. Their restrictions may not be conspicuous at a glance, but their pain, limitations and inability to function normally can be debilitating.

What may seem easy to you may seem like a 14,000 foot hurdle to them. Many even collapse in stores, become very dizzy and weak or even black-out. Being able to park close to the entrance of a building when they need to allows them to run an errand they otherwise would not have been able to conquer.

At any rate, the purpose of accessible spaces is to assist those with many types of disabilities and health conditions. For those with various types of limitations, the spots help make it possible for them to shop or visit the doctor.

How do you know who can park in an accessible space and who cannot? Look for a temporary or permanent placard in the front window or a disabled license plate. These items are received after an application, which is completed by a patient’s doctor, is approved by the Department of Motor Vehicles (DMV).

Each state’s DMV has specific guidelines and requirements the person must meet in order to receive a placard or license plate. Most states take into consideration the impairments due to certain conditions, as well as the implications stemming from aggravations of these conditions. Therefore, if a person is issued a license and is displaying it, then they have the legal, medical right to park there.

The following are few assumptions regarding accessible parking:

Assumption 1 – Drivers can simply request a placard from the DMV without any proof or documentation.

Drivers cannot request an accessible plate or placard without a form completed by a licensed physician and with their verifiable license number.

Assumption 2 – Doctors are irresponsibly filling out forms for patients.

Doctors have no personal gain by doing so.

Assumption 3 – Drivers are borrowing a placard from a relative.

Many people believe this happens often, but do not personally know anyone doing so. At any rate, we cannot assume someone is using a placard that does not belong to them, because they do not “look” like they have a disability.

If someone personally knows an individual who has stolen or borrowed a placard, they can file a complaint with the DMV. If we have further concerns with the application and qualification process, we should consider using the legislative process to address them, rather than confronting individuals in a parking lot.

Chances are the person displaying a placard or plate is in fact parked legally and needs the space for physical and/or medical reasons. As you can imagine, it is difficult enough to live with such illnesses, injuries and disabilities that wreak havoc in one’s life without being harassed every time one needs to go shopping or to the doctor. Finally, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend may be standing right in front of you!

This article was first published on Disability.Blog by Disability.gov. October 31, 2012.

Photo courtesy of Hernando County, Florida Tax Collector

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Don’t Judge by Appearances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Filed Under: Accessibility & Assistance, Living with Invisible Disabilities, Personal Journey Tagged With: accessibility, accessible parking, advocate, awareness, caregiver, disability, illness, injury, invisible disabilities, pain, personal story, spreading the word, support

2012 Online Disability Expo Now Available Through December 26

IDA Receives “Best Booth Award” for Allsup’s Disability Expo

January 23, 2013 by admin Leave a Comment

Press Release

IDA Receives the “Best Booth Award” for Allsup’s Disability Expo

Parker, CO – January 23, 2013. The Invisible Disabilities Association is thrilled to receive the “Best Booth Award” for Allsup’s True Help® Disability Web Expo. The free, online expo was held on September 27, 2012 and available on-demand through December 26th.

15 non-profit organizations were invited by Allsup to participate in the event. IDA presented 6 Video Interviews and LIVE chats with our experts. We also made informative pamphlets, hand-outs, videos and resources available to the attendees.

The award included a $1,000 scholarship to IDA to help us continue to encourage, educate and support people touched by illness and disabilities around the world. This award was determined by the feedback and votes from attendees of the expo.

Thank you everyone who attended and voted for us!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

Additional Resources

IDA Presents LIVE Chats with Our Experts September 27th

Free Online Disability Expo with IDA September 27, 2012

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Filed Under: IDA Events, IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: advocate, awareness, caregiver, disability, doctors and nurses, environmental illness, event, helpful tips, IDA award recipient, illness, injury, inspiration, invisible disabilities, loved ones, news, non-profit, outreach, pain, personal story, press release, seminar, speaker, spreading the word, support, video

What’s So Funny About …

January 23, 2013 by KarynBuxman 1 Comment

By Wayne Connell, Founder & President, Invisible Disabilities Association and Karyn Buxman, RN, MSN, IDA Advisory Board.

My journey over the past two decades with my wife, Sherri – whose life is filled daily with intense pain, brain fog, overwhelming fatigue and isolation – is full of more downs than ups. It seems like the easy thing to do would be to throw my hands up and scream. I joke sometimes that Murphy has nothing on what we go through each day.

Yet, despite all of the daily suffering, we try to laugh. We laugh at each other. She laughs at me more than I laugh at her, especially when I bolt straight up in the middle of the night and try to figure out what just made that noise and where I am. We laugh at the absurdity of each moment. We laugh when her medical records are lost for the umpteenth time. We laugh at I Love Lucy. I bought all 186 episodes and watched them each night for six months straight. She calls me her Ricky and I call her my Lucy.

The real question is, are we just crazy? Maybe we are not serious enough about her illness. I don’t believe that’s the case. I think we would go mad if we didn’t laugh when someone asks Sherri if she has tried Tylenol for her pain (seriously?). Well, let’s ask an expert. Say Karyn Buxman, RN. Her Masters of Science in Nursing is in Therapeutic Humor. She is the Past President of the Association for Applied and Therapeutic Humor and the editor of the Journal of Nursing Jocularity. Karyn is also the author of the new What So Funny About series of books. She has been a long time Invisible Disabilities Association (IDA) Advisory Board member and a personal friend of Sherri’s and mine. Did I mention she is also in the National Speaker Hall of Fame? I could go on.

Karyn, take it away…

What’s not funny about disabilities?

A diabetic, a blind man and an amputee walk into a bar. The bartender says, “What is this – some kind of joke?”

Having a disability is no joke. But it can be a laughing matter. Pain, suffering, isolation, stress, depression, financial hardships – the problems can seem never ending. And to survive you need all the possible tools in your tool belt that you can find. One tool that is frequently overlooked is humor.

Science is affirming what we’ve suspected all along – laughter is good medicine. The benefits for you are so numerous that you are not going to want to wait for humor to happen by chance. You’ll want to be proactive and experience humor by choice. And the good news is, you don’t have to be funny. You just have to see funny.

What can humor do for you?

Physically:

We’ve known for many years that negative emotions can wreak havoc on your body. Feelings of sadness, depression, fear, anxiety and stress can actually compound many of the issues you or your loved one may already be suffering as a result of a disability. For instance, stress is now known to exacerbate health problems such as diabetes, cancer, Alzheimer’s, arthritis, COPD, multiple sclerosis, Parkinson’s, epilepsy, migraines, cardiovascular disease, depression and many more.

Stress raises hormones that cause an inflammatory response throughout your body. Studies show that laughing lowers your levels of the stress hormones cortisol and adrenaline. This may be reflected in lower blood pressure, lower blood sugar, improved circulation, enhanced digestion, decreased inflammation, and diminished pain and discomfort, just to mention a few. Another physical benefit of humor and laughter is decreased muscle tension – another great pain reliever.

Psychologically:

In my opinion, language was invented in order for people to communicate, whereas humor was invented in order for people to complain. Dealing with a chronic disease can trigger anger – and humor is a wonderful way to help process the negative emotions. And while people will run like the building is on fire when a complainer approaches, humor can be a socially acceptable – even enjoyable – way for people to vent.

Part of having a disability – any disability – is that you’re going to feel frustrated, you’re going to be angry, you’re going to have moments when you are filled with rage. It’s unrealistic to think that embracing humor as a coping strategy is going to eliminate those feelings. But repressed anger can make your symptoms even worse.

Humor redirects anger, instead of avoiding or denying it. This redirection can defuse a lot of rage, bringing with it a sense of calm, relief and a fresh perspective. The underlying circumstances that made you angry still exist, but after you’ve laughed, you’re better prepared to address those circumstances.

Socially:

Humor is an effective way to combat social isolation. You can use humor to directly address some of the issues that crop up in your relationships. Humor has been found to strengthen existing relationships (which is good if you like the people you know!). Regular use of humor is thought to make us more attractive to other people, which can increase your social circle and your base of support (this is good news if you don’t like the people you currently know).

But can you help me be funny?

Now that you understand some of the benefits of humor, let’s look at how you can proactively make this part of your daily routine. Here are seven tips on how you can increase your Laughter Factor:

1. First assume that there is humor to be found. If your assumption is that nothing funny is happening around you – then you miss it. Yet if you believe that something humorous is waiting to be found – you will discover it.

2. Raise your awareness. If you are proactively looking and listening for something humorous, you will see and hear what most others miss. Like the tourist who called a hotel in Florida wanting to know “Which beach is closest to the water?” Or the 5 year-old who asked his grandmother “Why doesn’t your skin fit your face?”

3. Manipulate your environment. Surround your living and working space with playful and entertaining items. These might be toys or games; funny books and DVDs; whimsical signs, cartoons, art, or posters; colorful clothing; entertaining CDs or mp3s. If you have fun things in your environment, you increase your likelihood of laughter.

4. Create a Play List. Write down at least 10, preferably 20, things you find fun to do. Ideally half of the items on your list should cost little or nothing to do. The plan: Next time you are feeling uncomfortable, sad or fatigued, pull out your list and make an agreement with yourself to do at least one item on your list. Don’t wait to feel better to play. Play and then feel better.

5. Use the Internet. There are numerous joke and cartoon sites – bookmark them and check them out on a routine basis. And YouTube has a plethora of clips that are guaranteed to bring a smile to your face. (For starters, type “laughing babies” into the search box. What is more contagious than a baby’s laugh?!)

6. Laugh anyway. If there is nothing funny to be found, fake it ‘til you make it – your body may not know the difference. And often it will become real laughter. If you want guidance, there are groups that teach how to laugh for no reason. Check out World Laughter Tour or Laughter Yoga.

7. Laugh at yourself. When all is said and done, you can take your disability seriously – it’s serious stuff. But you can take yourself lightly. Learn to separate the two. You are not your disability. You are an amazing and amusing individual with a rich resource of life experiences.

Hopefully with the tools and information I’ve given you, you can put yourself and your life in their proper perspective. Laugh at your mistakes, your foibles and your embarrassing moments, as well as your successes, your pleasures and your joy-filled moments. And don’t wait for humor to happen by chance. Experience by choice and reap the benefits today!

We hope this has been a very insightful article for you. We plan to bring you more like it in future Disability.gov blogs. Karyn Buxman joined the Invisible Disabilities Association on September 27th for the first ever Online True Help® DisabilityWeb Expo, which was sponsored by Allsup, for one of our online Expert Chats. Learn more about this event and many more on our website!

This article was first published on Disability.Blog by Disability.gov. August 24, 2012.

RELATED ARTICLES:

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

Filed Under: Coping and Thriving, Finding Humor, Living with Invisible Disabilities Tagged With: author, awareness, caregiver, disability, doctors and nurses, helpful tips, humor, illness, injury, invisible disabilities, loved ones, pain, personal story, speaker, spreading the word, support

http://www.InvisibleDisabilitiesCommunity.org
http://www.Facebook.com/InvisibleDisabilities
http://www.InvisibleNoMore.TV
http://www.Facebook.com/InvisibleNoMoreTV
http://www.YouTube.com/InvisibleDisability
http://www.Twitter.com/INVDisabilities
http://www.InvisibleHero.org
http://www.CleanerIndoorAir.org

7 Realities of the Invisible Becoming Visible with Wayne Connell: IDA Video Seminar

January 7, 2013 by Wayne Connell Leave a Comment

Invisible Disabilities Association Founder and President, Wayne Connell shares 7 points about invisible disabilities and how to be a source of support to those who live with them.

This video is an excerpt from his seminar of the same name that he has given to various groups and organizations.

Wayne’s wife, Sherri lives with debilitating Progressive Multiple Sclerosis, Chronic Late Lyme Disease and Chemical Injury.

7 Realities of the Invisible Becoming V-I-S-I-B-L-E

V = Vast
I = Invisible
S = Society
I = Individual
B = Believe
L = Love
E = Everyone

Wayne Connell, Founder and President
Invisible Disabilities Association
http://www.InvisibleDisabilities.org

ADDITIONAL RESOURCES

About Wayne

Filed Under: Becoming Visible, Invisible No More Tagged With: advocate, author, awareness, caregiver, disability, doctors and nurses, helpful tips, illness, injury, invisible disabilities, Invisible No More!, loved ones, outreach, pain, personal story, seminar, speaker, spreading the word, support, video

Being Truly Thankful

January 6, 2013 by Wayne Connell 3 Comments

By Wayne Connell, Founder and President of the Invisible Disabilities Association

It’s hard to believe that Thanksgiving 2012 has already come and gone. Usually it falls on the last week of November, so it was early this year. Even though Thanksgiving is now over, when I started thinking about what to write about this month, the obvious choice was being thankful. So here it goes.

I have so many things to be thankful for this past year. First of all, I am thankful to Disability.gov for allowing me to share, on a monthly basis, great stories, ideas, tips and insights about and for people touched by illness, pain and disability (read my previous posts on Disability.Blog).

Second, I am so thankful for you, the reader. You have provided wonderful insights via your numerous comments, and have honored me with thousands of Facebook “Likes”. Please keep spreading the word and sharing the Invisible Disabilities Association’s (IDA) message though social media. I hope the stories provide comfort and validation for your daily journey with illness and pain, much of which may be invisible to others. I am also thankful for my faith, my friends, the IDA Board members, the IDA supporters and sponsors and so many others.

Finally, I am very thankful for my family and especially my wife, Sherri, who provides many of the stories I write about because of her daily life with illness and pain. I know she would rather not have a story and instead be living a normal boring life. Ours is an adventure every day. Sherri amazes me with her determination during each of life’s difficult moments.

As many of you know, because of the invisible nature of many illnesses and disabilities, sometimes family members and friends can have a hard time believing what we go through. This may be partly because they still see you the way you were before illness and pain. Even though you made the transition (and not by choice), they haven’t. Of course, because of the invisible symptoms, “seeing is believing” doesn’t always work. My advice to family and friends is simply to believe your loved ones when they tell you what they are going through.

Last week for Thanksgiving, Sherri and I traveled to my brother’s house to spend time with him, my sister-in-law, my four nephews and my mom. I haven’t been to his house in three years and it has been nine years for Sherri. Riding in the car is difficult for Sherri, and my brother lives five hours away. The four day weekend helped because it gave Sherri some time to recuperate from the drive. A shorter stay would never have worked.

What made this past Thanksgiving so special, probably the best one we have had in a decade, is that we got to see my brother, his family and my mom. But it wasn’t just seeing them in person, which was great, but what they had to do to allow Sherri to stay at their house and to interact with them.

In addition to MS and Lyme disease, Sherri lives with chemical intolerance, also known as multiple chemical sensitivity (MCS). She gets very ill from any type of fragranced or chemical product. It is estimated that 12.5 to 15 percent of Americans live with this condition. People with asthma, post-traumatic stress disorder (PTSD), autism and many other illnesses can also be impacted by the chemicals used in fragrances. You can find more information about MCS at www.cleanerindoorair.org.

I am so thankful to my family for not only using fragrance free products during our stay, but also removing all of the candles and any other products in their house that had a fragrance. They changed their laundry detergent years ago so that it wouldn’t be a problem.

One of the main issue that impacts people with illness is isolation. During our trip, Sherri and I cherished the togetherness and time with our family. Was it hard for my brother’s family and my mom? According to them, the answer is no. One of my nephews even commented that in order to spend time with his Aunt Sherri, he gladly gave up his favorite orange colored shampoo for the four day stay.

There are so many people who are in pain daily who feel left out at this time of year. Reaching out to them is not a hard thing to do. Maybe it’s a phone call just to say “hi” and let them know you care. Maybe you can bake them their favorite cookies or pie and deliver that homemade gift to them. You can also send them a card or present, although your presence would probably be their favorite gift.

On our social network, IDA hosts online chats during the holidays for those who would like a sense of community. You can help, too, by reaching out to your neighbors, friends and family who you know are dealing with illness and pain. Let them know you care. Tell them you are thankful for them, that they inspire you and their perseverance amazes you.

When you spend time with them, talk about things other than their illness. They live with the pain and disability daily and sometimes would much rather talk about the weather, the holidays, shopping or their family and friends. Together you can enjoy expressing your blessings and gratitude.

We can all make someone else’s day brighter this holiday season by sharing a smile, a hug, a card, a meal, a call or a kind word. All of these cost little or nothing, yet they can impact another for a lifetime. If we work together and love one another, we can be truly thankful for each other. Let’s all envision a world where people living with illness, pain and disability will be Invisible No More!

This article was first published on Disability.Blog by Disability.gov. November 30, 2012.

RELATED ARTICLES:

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

The Visible Invisible Disability (coming soon)

About Wayne

Filed Under: Coping and Thriving, Living with Invisible Disabilities, Relationships Tagged With: awareness, caregiver, disability, environmental illness, helpful tips, Holidays, illness, invisible disabilities, loved ones, pain, personal story, support

Looks Can Be Deceiving

January 6, 2013 by KatheSkinner 2 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and IDA Executive Board Member, Kathe Skinner, LMFT

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me. When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS, so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

This article was first published on Disability.Blog by Disability.gov. July 25, 2012.

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Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, awareness, caregiver, disability, doctors and nurses, helpful tips, illness, injury, invisible disabilities, Invisible No More!, loved ones, multiple sclerosis, pain, personal story, spreading the word, support

IDA Makes the “Top 10 Guest Blogs of 2012″ on Disability.gov

January 3, 2013 by admin 1 Comment

Press Release

IDA Makes the “Top 10 Guest Blogs of 2012″ on Disability.gov

Parker, CO – January 03, 2012. IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov. We are elated to announce that IDA Made the “Top 10 Guest Blogs of 2012″ on Disability.Blog by Disability.Gov. We are thrilled to receive this recognition and to be given the opportunity to bring about more awareness and education about Invisible Disabilities!

Disability.Blog wrote:

2012 was an exciting year for Disability.Blog! We expanded existing partnerships and began dynamic new ones with leading disability organizations, such as the Invisible Disabilities Association (IDA). IDA President and Founder Wayne Connell and IDA ambassadors, including Kathe Skinner and Jeff Vankooten, wrote thoughtful posts throughout the year to let our readers know about the importance of recognizing and understanding invisible disabilities, and to offer people living with chronic illness and pain an opportunity to tell their personal stories.

Read full story.

Thank you to all of our guest CO-authors and readers who have commented and liked our blogs, showing your support for what IDA is doing!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

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What’s So Funny About on Disability.gov

About

Filed Under: IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: accessible parking, advocate, author, awareness, caregiver, depression, disability, doctors and nurses, environmental illness, helpful tips, humor, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, mental illness, multiple sclerosis, news, non-profit, outreach, pain, personal story, press release, speaker, spreading the word, support, traumatic brain injury

Association of Applied Therapeutic Humor

IDA on HUFFPOST LIVE News

December 12, 2012 by admin 6 Comments

Press Release

IDA Invited to be a Special Guest on HUFFPOST LIVE News

Parker, CO – December 12, 2012. Wayne Connell, Founder and President of the Invisible Disabilities Association was honored to be a Special Guest on HUFFPOST LIVE produced by THE HUFFINGTON POST.

Nancy Redd hosted this informative broadcast entitled, “Not Handicapped Enough.“

Joining Wayne was Hall of Fame Speaker, Humorist and Nurse, Karyn Buxman, RN, MSN. Karyn is also an IDA Advisory Board Member, author of the book series, “What’s So Funny About…” and founder of Journal of Nursing Jocularity. Karyn has spoken at several of IDA’s events and was the recipient of the 2009 IDA Healthcare Award. She is the past President of the Association of Applied Therapeutic Humor and teaches nurses, businesses and people living with illness and pain how to use humor as stress-relief and therapy.

Wayne’s wife, Sherri was also invited to share her insights and perspectives on living with invisible disabilities. Sherri lives with Progressive Multiple Sclerosis, Chronic-Late Lyme Disease and Chemical Injury. Once a very active young woman, singing and dancing in musicals, achieving multiple college degrees and enjoying her career, Sherri has been unable to care for her own daily needs since 1991. Sherri and Wayne were married in 1994.

HUFFPOST LIVE producers were inspired to air this episode after reading an article from Elsa Sjunneson-Henry, “I May Be Disabled, But People Don’t Think I’m Blind Enough.” Elsa was also a Special Guest on the evening’s program.

Thank you goes out to HUFFPOST LIVE and THE HUFFINGTON POST for airing this valuable information and awareness! WATCH HERE!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

ARTICLE RESOURCES

“I May Be Disabled, But People Don’t Think I’m Blind Enough.“

Journal of Nursing Jocularity

Karyn Buxman, RN, MSN

Invisible Disabilities Association

SherriConnell.com

“What’s So Funny About…“

Wayne Connell

About

Filed Under: IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: advocate, author, awards, awareness, caregiver, celebrity, disability, doctors and nurses, elsa s. henry, environmental illness, event, helpful tips, huffington post, huffpost live, humor, illness, injury, inspiration, invisible disabilities, karyn buxman, legally blind, loved ones, nancy redd, news, non-profit, outreach, pain, personal story, press release, service dog, sherri connell, speaker, spreading the word, support, television, video, vision impairment, Wayne Connell

IDA on Disability.gov – Don’t Judge by Appearances

November 26, 2012 by Wayne Connell 5 Comments

IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov.

Article Excerpt: Have you ever seen someone get out of a car parked in a space reserved for people with disabilities, who did not LOOK disabled? Did it make you feel very uncomfortable or even upset? Did you let them know of your disapproval by giving them a dirty look or yelling at them? … Read the entire blog here on Disability.Blog. Published October 31, 2012.

Leave your comments on the article and share it with your friends and family on Facebook, Twitter, LinkedIn, Google+ and by email below.

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What’s So Funny About on Disability.gov

About Wayne

Filed Under: IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: accessibility, accessible parking, advocate, awareness, disability, disability.gov, illness, injury, invisible disabilities, pain, personal story, spreading the word, support

Join the Expedition

November 26, 2012 by Wayne Connell 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world!

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14^th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5^th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.

2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.

2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.

2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.

2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.

2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.

2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.

2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.

2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.

2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.

2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.

2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

In addition, check out our great expert chats on the first ever Online True Help® Disability Web Expo sponsored by Allsup, which will be held on September 27^th. Register today for this free event. Topics include:

“Be Expedition Ready – Learn about preparing for the journey of care giving” by Antarctic Mike
“Ready, Set, Thrive – Nine new rules for engaging change and managing stress” by Jeff Vankooten
“7 Realities of the Invisible Becoming Visible” by Wayne Connell, IDA Founder and President
“Communication Do’s and Don’ts for People with Disabilities” by Kathe Skinner, MA, LMFT
“Humor for Health & Well-Being” by Karyn Buxman, RN, MSN, CSP, CPAE
“Your Changing Brain – The owner’s manual to your mind” by Rick Watson

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

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What’s So Funny About on Disability.gov

About Wayne

Filed Under: Becoming Visible, Celebrities, Invisible No More, Personal Stories Tagged With: advocate, awards, awareness, banquet, caregiver, celebrity, disability, doctors and nurses, event, fundraiser, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, news, non-profit, outreach, pain, personal story, speaker, spreading the word, support

IDA on Disability.gov – Join the Expedition

October 5, 2012 by admin Leave a Comment

IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov.

Article Excerpt: In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. On October 14th we will, “Join the Expedition” of caregiving and loving those living with illness, pain and disability.

See what an amazing difference IDA is making with awareness, education and support, as well as our incredible 2012 Award Recipients and Keynote Speakers, Antarctic Mike and Angela Pierce. This evening is bound to be a journey you will never forget! Read the entire blog here on Disability.gov. Published September 19, 2012.

Leave your comments on the article and share it with your friends and family on Facebook, Twitter, LinkedIn, Google+ and by email below.

RELATED ARTICLES:

IDA’s Looks Can Be Deceiving on Disability.gov

About

Filed Under: Invisible Disabilities Assoc. Awareness Tagged With: advocate, awareness, banquet, caregiver, celebrity, disability, doctors and nurses, event, fundraiser, helpful tips, illness, injury, inspiration, invisible disabilities, loved ones, non-profit, outreach, pain, personal story, speaker, spreading the word, support

2012 IDA Honor Awards Banquet with Keynote Speakers, Antarctic Mike and Angela Pierce

Learning the Language of Invisible Disabilities

September 18, 2012 by AntarcticMike 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and Antarctic Mike Pierce, IDA Ambassador.

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story.

“Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks healthy, you’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

This article was first published on Disability.Blog by Disability.gov. March 14, 2012.

MEET ANTARCTIC MIKE AND ANGELA! Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

MORE INFORMATION:

Antarctic Mike’s Website

Antarctic Mike, IDA Ambassador

Angela Pierce’s Blogs on IDA

Angela Pierce’s Website – Falling Off the Mountain

RELATED ARTICLES:

What’s So Funny About on Disability.gov

About Mike Pierce

Antarctic Mike (Mike Pierce) is a professional speaker, managing partner in a recruiting company, an avid adventure athlete, and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, but you look good, caregiver, disability, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, kidney disease, language of inviisble disabilities, loved ones, marriage, pain, personal story, ptsd, speaker, spreading the word, support, traumatic brain injury

What to Say, What Not to Say and How to Help People Living with Illness and Pain

September 17, 2012 by admin 4 Comments

Ask anyone living with illness or pain and they will probably be eager to share what many people have said to them over the years that they didn’t feel was very encouraging. In fact, many will tell you that they were very hurt by something someone said.

It is true, that some people in this world may say something that is intentionally judgmental or negative. Nonetheless, we believe that in many cases, friends and family really do want to be supportive, but simply don’t know how.

Some people choose to ignore the issue or person; some toss out platitudes like simple fix-its and others share what they feel is the right thing to say with an expectation that it will be met with appreciation for their insight. However, loved ones often they find themselves perplexed or even angry when instead of being elated by the comment, their friend or family member is clearly frustrated by what was said. Sadly, these encounters can lead to the breaking down of communication and the relationship as a whole.

IDA Founder and President, Wayne Connell and his wife, Sherri, know all too well how relationships can suffer or even end. Wayne believes that loved ones need to learn what he calls, “The Language of Invisible Disabilities.” People can learn these communication and support skills by learning what to say and what not to say and why.

When they can discover why a certain comment or suggestion is not well received, they can gain a better understanding of their loved one’s perspective. This allows them to ascertain how and why certain comments may cause their loved one to feel misunderstood, judged or as if their situation, losses and perseverance are being minimized. As a result, they can move on to learning what kinds of interchange and assistance gives hope, encouragement and the strength to keep fighting.

All of these things are addressed in IDA’s book, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain, written by Wayne and Sherri (all proceeds go to IDA).

This book gives practical tips on what to say, what not to say and how to help. It also gives insight into why, we as humans, often respond the way we do to debilitating conditions that are not readily obvious. It shares how we may protect ourselves and try to protect our loved one with denial. And it explains how a loved one may appear as if they do not care, when in fact they do. Yet, they just find it too painful to acknowledge the situation, because they don’t want to see their loved one suffer. These points not only help friends and family, but they also help those living with illness or pain better grasp where their loved one is coming from as well. These are the first steps to restoring relationships.

The video below is from the Online Seminar, What to Say, What Not to Say and How to Help People Living with Illness and Pain with Wayne and Sherri Connell. It was presented during the 2012 National Invisible Chronic Illness Awareness Week (NICIAW), founded by Lisa Copen. Wayne and Sherri were Special Guests for the NICIAW Seminar, Invisible Disabilities and the Husband as Caregiver in 2010 that was also featured in 2011. IDA has been involved in the NICIAW week since it’s inception in 2002.

RELATED ARTICLES

Chronic Illness Tips: 263 ways to more than “just get by.” Available to download for FREE! Tips adapted from IDA’s booklet, But You LOOK Good! into a collaborative project by NICIAW Founder, Lisa Copen.

FREE Chronic Illness Tips eBook with IDA Founder. Chronic Illness Tips: 263 ways to do more than “just get by.” Lisa Copen and Friends. Rest Ministries.

IDA Founder Guest Speaker for National Invisible Chronic Illness Awareness Week. IDA Press Release. July 15, 2012.

Invisible Disabilities and the Husband as Caregiver. IDA Founder and President, Wayne Connell. Interviewed by Lisa Copen on BlogTalk Radio. National Invisible Chronic Illness Awareness Week Online Seminar. September 16, 2010. Featured again September 2011. Listen Here

What to Say, What Not to Say and How to Help with Wayne and Sherri Connell. Online Conference Guest Speakers for the National Invisible Chronic Illness Awareness Week. Founded by Lisa Copen of Rest Ministries. Video. September 10, 2012

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Filed Under: IDA Events, Invisible Disabilities Assoc. Awareness Tagged With: advocate, author, awareness, caregiver, disability, doctors and nurses, environmental illness, event, helpful tips, illness, injury, inspiration, invisible disabilities, loved ones, non-profit, outreach, pain, personal story, seminar, speaker, spreading the word, support, video, what to say

It’s All in Your Head

August 11, 2012 by JeffVankooten 21 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association, and Jeff Vankooten, Professional Speaker and Invisible Disabilities Association Executive Board Member

“It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. Many people live with the stigma of this label. Some even feel shame and believe so much that they themselves are to blame that they take their own lives.

Maybe it is “all in your head.” There are many conditions that exist as a dysfunction or disease of the brain. Depression, Alzheimer’s, schizophrenia, bipolar, autism, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), epilepsy, dyslexia, multiple sclerosis, Parkinson’s and ADHD to name a few. These are real disorders and diseases even though they are unseen, and in many cases go undiagnosed or misdiagnosed for years.

Jeff Vankooten, a professional speaker and Invisible Disabilities Association executive board member shares his story below:

I have bipolar disorder. It has been my constant companion most of my life. It’s like a storm cloud that hovers nearby threatening every day to rain. I’m a different person now than I was before it “kicked in.” I’m more serious and less jovial. I’m more guarded with people. I mistrust my ability to make decisions. The varying highs and lows have created an inconsistent approach to life. Yet, in some ways, it has been a blessing. That may sound counter-intuitive, but I am a richer person because of it.

Here are what I find to be the benefits of living under the description of bipolar disorder:

• Depth of Empathy: I can uniquely understand the despair of others, and listen with an attentive ear to those who are suffering. That depth of empathy resonates with people who seek me out to be a compassionate ear and persistent source of hope. God has used this illness and redeemed it for the benefit of others.

• Strength of Relationships: When I was in college, my roommate learned how to monitor my emotional health. He was not intimated by, or afraid of, my invisible disability. When he sensed I was beginning to spiral into depression, he would get me up and we would walk around the neighborhood together. The walks were special because he would always provide “Swisher Sweet” cigars. They are thin, short cigars with a flavored plastic tip. I’m not sure why, but they played a big role in my recovery. Regardless if you have an invisible disability or not, ask yourself who or what are your “Swisher Sweets”?

Though having bipolar disorder has strained some relationships and ruined others, the one with my wife has been solidified. Often marriages dealing with spousal bipolar end in divorce. It can be too much and take its toll on the stability of the relationship. It hasn’t been easy. Nothing of significance ever is. But my wife’s “Swisher Sweets” of patience, compassion, and yes, a swift kick in the butt from time to time, has been invaluable to my life. She gives me the strength to carry on and the joy to participate in life. I love her deeply.

• Embracing of Moments: Depression has a tight logic. I can make a pretty convincing case as to why everyone ought to be bummed out. It’s critical to me that I don’t stay in my argument. I need to break through the closed system of despair by embracing each moment of every day that makes up the totality of my time. I relish the moments spent with my children and friends. I savor every dinner and I enjoy every ride at the amusement park. They are all precious moments.

Education is a real key in learning about the illnesses people are living with each day. The best way to get this education is to ask the people with the disorder or disease themselves. Take time to learn the language of invisible disabilities. Take time to listen and not pre-judge. Be a friend and comforter, not an accuser. We all need to make it a safe place for people living with brain illnesses, disorders and disease to share their difficulties and triumphs. Let’s remove the stigma and shame and be supportive in any way we can.

They can’t just “get over it” or stop being depressed. If someone breaks an arm or a kidney fails, we don’t tell them to simply “snap out of it.” They need real help, and we need to make this world a safe place for them to ask for and to receive it. By listening, learning and loving, we can help them be Invisible No More!

This article was first published on Disability.Blog by Disability.gov. May 30, 2012.

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About Jeff Vankooten

Jeff Vankooten is a professional speaker who helps people thrive in disruption and change. He also coaches people over 40 who want to harness their life’s experience into talks and products that leave a legacy. He is a native of Denver, Colorado where he lives with his wife, three kids and really big dog.

Filed Under: Living with Invisible Disabilities, Personal Journey Tagged With: advocate, author, awareness, bipolar disorder, depression, disability, helpful tips, illness, injury, inspiration, invisible disabilities, loved ones, mental health, personal story, speaker, spreading the word, support, Traumatic Brain Injury (TBI)

Walking Out Your Front Door Is The First Step Up Your Mountain

August 6, 2012 by Angela Pierce 1 Comment

Since my accident in 1985, I have been through some very difficult times. There have been many days when I’ve felt fearful to “walk out my front door.” However, the focus of this blog is to help you as the reader understand that when you push through fears and “walk out your front door,” it changes your focus from what you can’t do to what you can do.

Here is an example while I was on a recent trip to Colorado. I stayed with my sister Marcia. During this visit, we had decided to have our nails done. However, she could not go due to the fact that she had to work. I decided to treat myself and get my nails done without her. This was awkward, as I was already in an unfamiliar place and was somewhere that I had never been to. I made the decision to “walk out her front door.”

I was under the lamp waiting for my nails to dry when I noticed a woman sitting next to me and complimented her on her nails. We had some small talk during a big hailstorm. I was concerned about leaving and going to another salon to get my hair washed because the rain was pouring down like crazy, and I did not have a car. This woman, whose name I still did not know, offered to not only give me a ride, but told me she would move her car for me and opened the umbrella right in the store. Going outside in the pouring rain and hail, I did not get a drop of water on me thanks to this woman.

This was a complete stranger who did this for me. She saw that my hands were shaking and asked if I took prednisone, a common prescription drug for tremors. I told her that I did not take it, but I knew what it was due to my kidney disease (prednisone is also prescribed for kidney disease patients). She asked me about my illness. I told her “it is a long story.” She wanted to hear about it, so I told her about my rock climbing accident. After I had shared my story, she opened up about an illness that she struggles with. I invited her to the 2012 IDA Awards Banquet and mentioned that my husband and I were the keynote speakers. She said that she really wanted to come. She eventually told me her name, which is Suzanne.

What I learned through this is that you can “walk out your front door” and make a difference in a stranger’s life. When you live with an invisible disability, you may be pleasantly surprised by the impact you can make when you tell someone your story and what it has taught you. Many strangers that we could meet every day have challenges like us, and they are looking for someone to talk to. They need us as much as we need them. That is why an organization like the IDA can be so helpful.

The key to “walking out your front door” and moving forward is to not only go outside, but to meet people and have meaningful conversations with them. My meeting Suzanne in an unfamiliar place and not being afraid to tell my story, led to a meaningful conversation and a new friend. This was worth “walking out my sister’s front door.”

OK, here is the conclusion: Come to the 2012 IDA Awards Banquet on Oct 14 in Denver and you’ll not only hear my story, but you will meet many people and hear many inspiring stories from those who “went out their front door.”

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

Filed Under: Living with Invisible Disabilities, Personal Journey Tagged With: banquet, disability, event, fundraiser, helpful tips, illness, injury, inspiration, invisible disabilities, pain, personal story, speaker, spreading the word, support

Kathe Skinner’s Website, Being Heard Now

IDA on Disability.gov – Looks Can Be Deceiving

July 26, 2012 by admin 8 Comments

IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov.

This article, Looks Can Be Deceiving, was Co-Authored by Kathe Skinner. Kathe is a Relationship Coach who lives with Multiple Sclerosis. She is also an IDA Executive Board Member.

Article Excerpt: Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them? … Read the entire blog here on Disability.Blog. Published July 25, 2012.

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Filed Under: IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: advocate, awareness, counselor, disability, heat intolerance, illness, injury, invisible disabilities, multiple sclerosis, pain, personal story, relationships

Woman’s Disability Inspires Husband to Reach Out to Others

Invisible No More

July 6, 2012 by Wayne Connell 6 Comments

Invisible No More!

Shining a Light on the Incredible Perseverance and Courage of Those
Living with Illness and Pain.

It all came crashing down in 1991. First, her legs became paralyzed and then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10 day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.

We met in 1992. Sherri was a customer of mine at an electronics store I was managing. Wow, was I smitten. We met again at a singles group at her church; all of the guys were surrounding her. Did I even have a chance? Afterwards, everyone went out together to a local restaurant. I, of course, sat across from her. All of the other guys who had been interested in her disappeared when they heard the words, “MS” and “Disabled.” Sherri figured she would tell me the truth right away, and maybe save her the pain of another relationship lost.

I was not deterred. I was falling head over heels in love. She had been a model, a beauty queen, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and looked up to. To me, she was still all of these and more. She was funny and intelligent, earning three college degrees, drop dead gorgeous and caring and loving of others.

Shortly after we started dating in 1992, Sherri was also diagnosed with Late Stage Chronic Lyme Disease, which was traced back to when she was bitten by a tick while visiting Arkansas at the age of 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.

We were married on September 4, 1994. We were in love. She started writing about her journey in pamphlets. She wrote about MS to help explain to family and friends about her illness. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the story on the inside. In 1996, she finally thought of a label that described her condition – she had an, “Invisible Disability.” I thought, “Wow! Your description really makes since!” Soon thereafter, I took some of her writings and posted them on a website, called The Invisible Disabilities Advocate.

Therefore, in 1997, the Invisible Disabilities Association (which was originally called The Invisible Disabilities Advocate) was launched. I had no idea that hundreds of thousands of people from around the world were dealing with their illnesses and pain, and how people did not understand and in many circumstances, believe that they had a disability because of the invisible nature of their symptoms.

Along with my wife, I wrote the booklet, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has sent more than 21,000 copies worldwide. Our organization continues to grow and support people from around the world with a message of understanding and encouragement; and IDA comforts those living with illness and pain by letting them know that they are not alone. IDA is also educating families, friends, co-workers and caregivers that even though a person’s symptoms may not be visible, they are very real.

IDA reaches around the globe with stories of suffering and triumph. We created www.InvisibleDisabilitiesCommunity.org as a supportive place to share the difficulties and to encourage people touched by illness, pain and disability. Our organization recently launched our second YouTube channel, www.InvisibleNoMore.TV, which brings to life the journeys of many living with invisible disabilities.

We also recently held IDA’s fourth annual Honor Awards Banquet in Denver, and you can see the stories of the very special guest speakers on our IDA YouTube Channel.

Learn about Matt Barrett’s amazing story of lifelong battles with 11 types of cancer with more than 1,700 surgeries, as well as his struggles with homelessness throughout much of his adult life.
Listen to Lori Frisher, a cancer survivor who was once hearing impaired and through cutting-edge technology, is becoming INVISIBLE NO MORE(SM) as she hears the sounds we take for granted.
Be moved by the story of former Captain Luis Carlos Montalván and his service dog, Tuesday and their journey together with Post-Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI).
Be inspired by former World Series Champion Ed Hearn as he shares about his life after three kidney transplants and skin cancer.
Read about Angela Pierce who survived a 130 foot free fall in a climbing accident, as she shares about living with a Mountain of pain.

These stories and many more are chronicled, as well, on www.InvisibleDisabilities.org

“Believing a loved one when they say they are sick or in pain is the most important thing we can do. Just because we can’t see from the outside, what they are battling on the inside doesn’t mean it doesn’t exist. Belief, validation and support can give a friend or family member the strength they need to continue the fight!”

Take the time in this New Year to encourage and believe a loved one living with illness and pain. Do not allow them to live in isolation anymore. As a society, we need to love first. Join IDA in envisioning a world where people living with illness, pain and disability will be INVISIBLE NO MORE(SM).

This article was first published on Disability.Blog by Disability.gov. January 4, 2012.

JOIN US IN DENVER ON OCTOBER 14, 2012. IDA wants you to “Join the Expedition.” Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

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Filed Under: Becoming Visible, Invisible No More Tagged With: advocate, awareness, disability, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, non-profit, outreach, pain, personal story, spreading the word, support

The Difference You Make

June 4, 2012 by Kris Harty Leave a Comment

“Did I read that right?”

I re-read the online invitation I received. It wasn’t an invitation anyone hopes to get. There was no ‘shhh’ finger-to-lips graphic, no indication of umbrella drinks, not even a hint of fun food.

There was, however, a beautiful photo of a radiant young woman with three young boys.

It seems a fundraiser is scheduled for someone I know, someone who is a colleague and friend. It has been a few months since we connected and this was the first I heard of her news.

My heart skipped a thump as my eyes re-scanned the text. The words took a moment to register in my unaccepting mind. She was recently diagnosed with breast cancer.

A small business owner and active business leader throughout much of the state, she has needed to curtail her activities, for obvious reasons, thereby curtailing her income, too.

It must have hurt to cut back on the passion that drives her in business and her usual accompanying dizzying schedule. What must hurt more is knowing she has three young boys to raise alone, while looking into an uncertain future, financially or otherwise.

No one ever thinks someone else will get cancer. When that someone is young, vibrant and churns out whirlwind energy that leaves the rest of us panting several hundred paces behind, it shocks something in our soul.

My soul was most certainly shocked.

The invitation said something about us needing to help someone who routinely and unselfishly gives so much while helping all of us. Yes, yes, that’s what we need to do. Give back. Even though the monetary giving back seems paltry in comparison to how much we’d like to help in a more vital way.

But that’s not our role. We can only stand by the sidelines and watch while leaving that role to her healthcare team- nurses, doctors and everyone else it will take to battle the battle inside. We trust them to fight this battle for her in the way the rest of us can’t.

Coincidentally– or not– the email I opened immediately prior to the invitation was an interview outlining the importance of the oncology patient and provider relationship. I want to ask her if she’s happy with her healthcare team that is taking care of her. I want to know that she likes them, trusts them and respects them.

It’s none of my business, really, yet I want to be assured. I write this knowing it’s not my assurance that matters.

I think back to friends and family who have fought the battle. Many won. Some did not. I remember how most raved about their nurses and doctors and techs who traveled with them on their roller-coaster journeys.

What a difference they made. Not only to their patients, but to their patients’ friends and family, most of whom they never met. They left legacies, unaware.

In whose life will you leave a legacy today, whether or not you ever read of it in print?

This article originally appeared in NurseTogether.com. Published with permission.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

Filed Under: Disability & Healthcare, Living with Invisible Disabilities, Relationships Tagged With: author, awareness, cancer, caregiver, disability, doctors and nurses, illness, pain, personal story, rheumatoid arthritis, speaker

IDA Executive Board Member – Jeff Vankooten

IDA on Disability.gov – It’s All in Your Head

May 31, 2012 by admin 4 Comments

IDA Founder, Wayne Connell continues to be a very popular Guest Blogger on Disability.blog by Disability.gov.

This article, It’s All in Your Head, was Co-Authored by Jeff Vankooten. Jeff is an author and speaker who shares his battles and lessons learned from living with bipolar disorder. Jeff is also an IDA Executive Board Member.

Article Excerpt: “It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. … Read the entire blog here at Disability.gov

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Jeff Vankooten’s Website

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Filed Under: IDA in the News, Invisible Disabilities Assoc. Awareness Tagged With: advocate, author, awareness, disability, illness, inspiration, invisible disabilities, Invisible No More!, jeff vankooten, loved ones, personal story, speaker, spreading the word