People with “Invisible" Diseases Struggle for Resources, Understanding

FoxFeed Blog

Posted by  Nancy Ryerson, March 12, 2015

For many, Parkinson’s disease symptoms change throughout the day. You may be symptomatic in the morning, but feel — and appear — well in the afternoon. While showing symptoms can lead to negative stigma, sometimes appearing symptom-free causes its own problems.

NPR recently covered the challenges faced by people with "invisible" diseases, such as Crohn’s disease and fibromyalgia. Because they generally don’t require wheelchairs or other visual signs, people with such diseases often struggle to access needed services, and may even be denied workplace accommodations. The story explained:           

When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.

While many people with Parkinson's don't consider it a disability, there are instances where accessibility becomes important. Alice Belous blogged on asking her neurologist about getting a handicapped parking permit, to which he replied that she should not because there are “people in wheelchairs who ‘really’” needed it more. Her physical therapist eventually helped convince her to apply. Since getting the permit, strangers have given her dirty looks and asked if she really needs the handicapped space when they see her in parking lots.

Groups like the Invisible Disabilities Association are working to raise awareness that not all diseases and challenges are readily visible.

"Hopefully folks will realize that there are handicaps that cannot always be easily seen or recognized,” writes Alice. “I’m just doing the best I can. Let’s just extend some grace to one another — and ourselves.”

Alice Belous is the mother of two adult children, and a poodle. She worked over fourteen years as a school librarian. Now she sells library books and ebooks for the largest book wholesaler in the U.S. and blogs at Bibmomma.

The diagnosis of Parkinson’s disease was determined before she was 50 yrs. old and as an Early Onset patient she tries to continue to be active. Alice loves to knit, nuno-felt and create items from felted wool in her spare time.

A year ago I gave in and applied for a handicap parking permit.  I feel funny using it because I want to “force” myself to walk without rigidity, but that doesn’t happen. I want to “force” myself to walk without stumbling, but that doesn’t happen either.  Like most people with Parkinson’s Disease I have good days and bad days. So far, my driving has not been affected.  I am able to respond quickly and I really don’t drive places other than the ‘hood. Everything like the bank, grocery, drug store and doctors are within a 2-5 mile radius of our home.

But I still feel strange parking in the handicap places.  So, on good days, I don’t. I park in normal spaces and walk, swinging my arms and carefully placing my feet one in front of the other. I haven’t fallen in public in a good long time.

Today we went to eat lunch and then to a “big box store”. I parked in the handicapped place next to the restaurant and when we finished we walked to the store. It was good exercise, but I was jiggling and tremoring my way through the parking lot.  Perhaps I feel guilty about having this handicap designation because my neurologist was hesitant to give it to me. He said that there were people in wheelchairs who “really” needed it more than me. But then my physical therapist intervened and told him that when I travel, or when I’m having a bad day, I really do need it – and he relented.

I hate having to rationalize Parkinson’s disease and my needs to people….most especially my doctor. And I hate being stared at in a parking lot having someone wonder, “is she really handicapped?” It makes this disease much harder to live with, much harder to deal with on a daily basis, and much harder to overcome.

Hopefully folks will realize that there are handicaps that cannot always be easily seen or recognized. I’m just doing the best I can. Let’s just extend some grace to one another – and ourselves.