Managing Other People’s Perceptions About RA

From the youngest age I can remember, I knew I was different because people looked at me differently. The cause was my juvenile rheumatoid arthritis. I looked sick—often pale, limping with swollen joints. And my apparent difference affected how people related to me.

Relationships with others have always been complicated by both my illness and disability. Often times people fell into two extreme camps: those whose sympathy compelled them to pay me extra attention and those who avoided me out of fear or discomfort. The really special group resides in the middle: treating me the same as others while also respecting my difference.

As a child, I didn’t handle other people’s reactions well. If anyone talked down to me, under the assumption I was not intelligent due to my physical difference, I was likely to snap. I didn’t like (actually, still don’t) people who are overly familiar and do things for me before asking. Special note: never push someone’s wheelchair unless you ask permission first! I’m likely to react by running you over!

On the other hand, being afraid of someone who looks different is natural, but I hope that by the time we’re adults we have learned to manage difference. This doesn’t always seem to be the case. I can laugh, which is good, because I have seen ridiculous reactions. For example, walking around me in a wide circle or addressing questions to my companion instead of to me.

The greatest problem I encounter with other people simply comprises a lack of thinking. For example, crowds of healthy people waiting for the elevator to access public transit, while I, in my wheelchair can’t board because they block the way. I’ve actually seen people in running or workout outfits boarding the elevator before I can. So many more examples of people pretending I don’t exist, jumping in front of me in line, and so on.

What I wish I had the time to say to them is that at some point in every person’s life they will experience illness. Hopefully it will be short-lived and they will be well again. But this is a time when we can momentarily remember how it feels to be unwell, how people deserve to be treated respectfully even if they have a chronic illness. My point is that a little sensitivity and understanding (and dare I say, basic decency) can go a long way.

I give credit to people who don’t understand my personal circumstances, but at least try. Very few people know I live with pain every day, some worse than others. Even fewer can imagine the incredible challenges I encounter in maneuvering the world with a wheelchair. But I appreciate when someone asks a question and am happy to try to share my experiences.

It doesn’t take a lot—just an open mind, a willingness not to make assumptions about me. For example, I had to laugh when one of my doctors asked me if I worked. I suppressed my giggle and said yes. But inside I was asking: what else am I supposed to do? I have to pay bills and afford health insurance. However, many people are too sick to work and I’m lucky that I can.

During the years, I’ve seen nearly all the kinds of reactions to my rheumatoid arthritis and disability that can possibly be imagined. I think I’ve learned how to manage nearly any situation with a new person. I’ve learned that I can’t change how people treat me, but I can change how I react to what I consider rude or poor behavior. For my own sanity, I try to be lenient in most cases followed by firmness when I need to stand up for myself.

A recent example occurred when I ordered a wheelchair accessible cab to take me to an important work meeting. I ordered the cab a week in advance, then called the dispatcher again a few minutes before the pick up to verify they were coming. When they informed me the cab was 20 minutes late, I expressed that I was unhappy, that I had an appointment and would possibly be late and asked that since I had booked the cab a week in advance if it was understandable that I would be upset. While the situation didn’t change, I felt it important to underline that having a disability did not justify poor treatment by the cab company due to a shortage on their part of accessible cabs.

Unfortunately, the world is hard on people with rheumatoid arthritis, chronic diseases and disability. There is no way around it and we are forced to cope with challenging circumstances every day. The only way I know how to cope is to persevere and not give in. But a little understanding by others can certainly go a long way.