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Dear Chronic Warriors: We Need to Stop Comparing Our Illnesses

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We live in a world filled with competition. We find ourselves rooting for a particular sports team and exclaiming things like, “My team is better than your team.” This trait of competition often carries over into our everyday life, too. Oftentimes you will hear one set of parents bragging on their children as another set of parents talk about theirs. Honestly, I always love seeing proud parents. You hear people in the workplace comparing cars and houses, and even hobbies like running become a competition.

OK readers, are you nodding along? My next statement may hurt a little, somewhat like ripping a band-aid off. This trait of competition is appearing in the chronic illness community. The longer a patient is a part of the chronic illness subculture the more it becomes recognizable. Please don’t stop reading yet, hear me out.

When I tested positive for rheumatoid arthritis almost nine years ago, I didn’t know a single person who had RA (or an autoimmune disease at that). I felt very alone and confused and turned to the internet for education. As I Googled “rheumatoid arthritis,” pictures popped up of disfigured hands and feet. First of all, the pictures terrified me but it also started the trait of competition (or comparison) for me. I remember thinking, “Well, I am not as sick as those people. My hands and feet don’t look anything like that. I must have a mild case of RA.” I believed that because I didn’t physically look like those pictures that popped up, that meant I was healthier than “those people.”

Then I found a support group online. Finally, I was able to connect with others who had RA and could offer advice and expertise. I stayed quiet in the group for a long time, but I read and studied every post like a new student to a foreign language. In the posts I found encouragement amongst these warriors, but every so often there would be that one person whose comment seemed like a “who is sicker” comment. Whether it was comparing blood inflammation markers, medications, overlap diseases or disease progress, the conversations would pop up every so often. This is when I first learned and noticed that competition amongst the chronically ill was a real thing.

Truthfully, I began to feel myself starting to go down that road too. I would read posts and think, “My blood markers are much higher than that,” or “I take so much more medication than that.” I started to develop the ugly trait of competition. I was seeking validation by comparing myself to others in my shoes.

It seems competition is just part of being human. Chronic illness community, let’s try to be more careful about allowing it into our world. Just because one person with chronic illness works full-time while another is unable to work does not make the one that works any less sick than the other. Just because one patient has lower blood inflammation markers in their blood than another does not mean that one feels less pain than the other. And particularly in the RA community, just because one warrior is seronegative does not mean they do not feel RA the same way as someone who is seropositive. Someone starting therapy in pill form may feel as much sickness as someone who is on infusion therapy. I personally have taken some injections that have made me sicker than an eight-hour infusion.

The healthy world is already judging most of us with invisible chronic illness because we “don’t look sick.” We already hear things from the healthy world like, “At least it isn’t…” Let’s not buy into it in our own community. I admitted I have been guilty of it myself. So perhaps this is to remind myself. I have begun working on trying very hard to build up other chronic illness warriors in online forums and in my personal life. I have a friend who struggles with mental illness and recently she said to me, “Well, I shouldn’t complain to you.” My response was, “Please complain. Our struggles are different but no less valid.” I have learned to pause before I reply to support group questions. Before I respond, I think to myself, “Is this answer helpful, is it an answer to the question they are asking, is the information I am providing accurate and factual?”

I may have lost some readers at this point but this issue has been on my heart. I see our online support group forums are growing rapidly and more of our world is starting to battle chronic illness and pain. There are new warriors popping up daily and I feel like it is the responsibly of us more seasoned fighters to set a tone for our newbies. I am fearful that our newbies may be frightened when they read things like, “Oh I took that drug, it was terrible and caused me such and such.” I am hoping us veterans can offer encouragement like, “Most patients start on that medication, I hope it does well for you.” We all have doctors monitoring our blood, lungs and heart; we need to trust that the physician for the newbie knows what is good for their current issues.

I know some will disagree with me. But my hope is that we remember we are of one community, already judged by the healthy world. We all have struggles that include emotional and physical struggles. They may be different struggles amongst our groups and conditions but the same thing impacts all our lives: it was the day our world changed and we became “sick” or “disabled.”

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Photo via DragonImages on Getty Images

Originally published: November 28, 2017
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