Is It Worse To Have An Invisible Disability or a Visible One?
Like most lupus patients, I always wonder if I’d be treated differently by my family, friends, and doctors if my illness was visible. If I used a wheelchair, would people understand how difficult walking is when I'm dealing with fatigue or muscle weakness? If my face looked as exhausted as I felt, would it be easier to convince people I need to sit down, sleep in late, or go to bed early? If the joints that hurt were red and inflamed, would colleagues understand why I can't always keep up with them?
This question has occupied my mind for years: is it better to live with a visible disability or an invisible one?
What an invisible disability means for me
An invisible disability allows me to blend in with the rest of society. It means I can sometimes bypass obstacles that people with visible disabilities or mobility issues can't, like stairs, curbs, or discrimination based on how I look. But living with an invisible disability means I often don't get the support I need from friends, family, and even doctors.
For me, the hardest part of living with an invisible illness is that others sometimes don't believe I'm sick. During the first year of my illness, I went to doctor after doctor searching for a diagnosis.
“Well, you look fine!” one doctor cheerfully proclaimed before declining to run more tests because “they might be confusing”. After the first six doctors I saw refused to take my symptoms seriously, I started dressing badly for appointments. I wore wrinkled shirts and badly-fitting pants. I didn't wash my hair the night before and I didn't put on makeup.
I tried to make my invisible illness visible.
Still, I was often told my “presentation” didn't indicate that my disease was severe or urgent, even when it was.
Featured Forum
View all responsesSuddenly being taken more seriously
Four years into my illness, I had a severe neurological flare. Suddenly, my invisible illness became visible. Unable to walk, I could only get around with a wheelchair. I lost most of my hair. The steroids I took to save my life puffed up my face and body, making me look like a cartoon character.
While doctors did take my illness more seriously when I looked sick, I wasn't prepared for strangers’ reactions to my appearance. If I went to a restaurant, waiters spoke to my family and friends, but not me. Because of my changed body shape, I couldn't fit into many of the clothes I wanted to wear. I ended up wearing T-shirts and yoga pants every day--a big change from the dresses and heels I favored. When I went out in public, children and sometimes adults stared at me.
The way strangers treated me wasn’t intentionally rude, but it often left me with the impression that they didn't believe I was intelligent or capable. In many ways, having a visible illness excluded me from parts of society that I'd once enjoyed.
Discovering how to cope
Having experienced both an invisible illness and a visible one, I wouldn't say that one or the other is more difficult to live with. The problems inherent in each type of illness are different, but equally life-altering. Whether my illness is visible or not, connecting with others who have visible or invisible disabilities has brought me comfort. These connections with others who are going through the same thing I am has also helped me discover ways of coping with the specific problems that come with each.
None of us are lucky to have lupus, but we're fortunate when we find communities who understand what we're going through.
Join the conversation