here’s at least one local radio talk show host in the greater Boston area that refers to people who are receiving public support as “bums”. He sees them in grocery lines using food stamps, while looking as able as any of the rest of us, and he cannot understand why they are on the dole. Perhaps the reason he doesn’t understand is that the person’s disability is one that is not obvious. 

It is impossible to “see” Cystic Fibrosis, Lyme Disease, Diabetes, or Multiple Sclerosis if the affected individual is not displaying any symptoms or using an appliance, such as a cane or portable oxygen tank. Epilepsy is not apparent to the casual observer unless the person is in the midst of a seizure, or being accompanied by a dog wearing identification as a Seizure Alert Dog. 

That is why Sherri Connell, who has Lyme and Multiple Sclerosis, as well as other problems that have resulted from the effects of both diseases, *sponsors her own web site to educate the public about invisible disabilities www.invisibledisabilities.org and has authored a booklet called, “But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain.”

There are many so-called “invisible” disabilities, both physical and mental, that are crippling enough to prevent a person from being able to work either part or full time. Mental disabilities like schizophrenia may cause auditory hallucinations (hearing voices is common), and the sufferer may have paranoid thoughts or other symptoms that interfere with the ability to feel safe, work with others, or maintain a regular work schedule.

Likewise, bipolar disorder (formerly known as manic depressive illness), or depression may cause paralyzing fatigue and extreme lethargy, suicidal thoughts, or insomnia. At the other extreme, manic symptoms may cause the sufferer to complain that his or her thoughts are “racing”. They may engage in unchecked spending, have grandiose thoughts, or suddenly give all their possessions away. All these are hardly conducive to maintaining adequate relationships with other people, or the concentration necessary to perform well at work. 

Alcoholics and addicts, so often criticized for being on public assistance, are often victims of these or similar mental disorders that have simply gone undiagnosed. Frantic to feel better, and perhaps unable to grasp that they are suffering from brain dysfunction, they may self-medicate the only way they know how, with alcohol or mind-altering substances. This rarely works, and, more frequently, they end up in of the three ways Alcoholics Anonymous’ literature describes: jails, institutions, or death. 

Unfortunately, far fewer resources go toward early intervention, or long-term inpatient or residential treatments that tend to have higher success rates, than to the criminal justice system, because addiction, even when precipitated by mental illness, is not an “acceptable” disability. Somehow, the afflicted are assumed to have “given in” to their illness, or are blamed for being “weak”.

In addition to mental disorders, there are physical ailments that can cause many debilitating symptoms like fatigue, pain, depression, seizures, or breathing problems, and can have others thinking, again, that the sufferer has “given in” to the illness, simply because the person has had to limit activities. Diseases like Lupus, Chronic Hepatitis, Heart Disease, and Fibromyalgia, can cause severe disability that is not immediately obvious to others. 

If the previously mentioned talk show host was at the checkout line standing next to a young mother with any of these diseases, would he even know? Would she be the subject of ridicule on his next show, since he seems convinced that no wheelchair means no disability?

In some cases, just living to an advanced age provides some of us with invisible disabilities. Osteoarthritis, generalized weakness, or cataracts can cause enough loss of function for someone to need help, but not be visibly disabled. It is important that the disabled are accorded the respect of not having to explain themselves all the time. 

As Sherri Connell says, we must learn to “see” with our ears. It is important to respect the disabled person’s perspective. After all, everyone knows how distressing it is to miss an event or or a day’s work now and then due to illness. Imagine how frustrating it is to miss these things permanently. 

Disabled people often seek assistance from the government only after much resistance to the limitations imposed upon them by their diseases or injuries. After finally making this statement of need, the disabled should not have to continually explain themselves.

Seniors and families who need help learning about, managing with, or educating others about an invisible disability can call SeniorCare’s Family Support Program or Elder Care Advisor at (978) 281-1750.

[For homecare services in your area: visit www.n4a.org]

* Correction. Sherri Connell's husband runs the website.

 

But You LOOK Good!    A Guide to Understanding and Encouraging People Living With Chronic Illness and Pain   Order Online at: www.invisibledisabilities.org   To Order by Mail: Please send $5.25 (for printing, binding, shipping, etc.) for each booklet (includes postage in the US). Make the check payable to "IDA" and Send Order To:   IDA, P.O. Box 4067, Parker, CO 80134   *Note! IDA reserves the right to make changes, edits in content without notice. The booklet may differ slightly from the website! Proceeds go to IDA.