How She Keeps Living with RA
A good friend of mine just shared an article with me that was recently posted on BuzzFeed by a young woman with RA. In the article, she honestly and eloquently describes her own emotional and physical battles with the disease.
I can relate to a lot of what she writes about in this article: the physical symptoms, the fears of disease progression and of the unknown, the isolation and the desire to emotionally escape, wanting answers, worrying about how others see the disease and me. One part of the article that especially stood out to me was when she describes trying to avoid her RA by distracting herself by “being on vacation” and partying with friends and her boyfriend. But at some point later, as she was learning more about what the disease meant for her life, she realized she couldn’t stay on “vacation” any longer.
“At first, my tendency was to avoid thinking about my diagnosis at all, and the beer-swilling boyfriend served as a perfect distraction. I excused my overlong relationship with him by telling myself, and anyone who would listen, that being with him was like being on vacation.”
I think that I, too, went on an “RA vacation” of sorts during my 20s, although a more extended vacation than the author’s. So much of my time was spent going to bars with friends, escaping into pints of cheap beer and cocktails, and house parties that went late into the night and early morning. I partied to socialize and have fun with friends, I rationalized. And I was afraid of missing out on things–on excitement, adventure, youth, life. But really, I was also probably trying to numb the physical and emotional pain of RA. Obvious escapism, but I didn’t want to think of it that way. And while I did have great fun (especially during my extreme karaoke phase), I don’t think it was the best or most healthy use of my time and energy. Drowning yourself in a bottle of wine or slamming vodka tonics stops the pain temporarily, but it comes back the next day, and worse than ever, usually.
While I still love to go out and have a couple drinks with friends or spend a hilarious night embarrassing myself singing karaoke at a bar, my party days are pretty much over–and that’s just fine with me. Now I escape by reading a lot more books, working on photography projects, watching favorite movies, and playing with my little nieces. I wish I hadn’t wasted so much time in “escape mode” during all of those years, but I can’t change the past. Recognizing and trying to practice healthier ways to cope with RA is a much more productive and satisfying way to move forward in life.
Another part of the article that I found interesting was the theory of personality type playing a role in a person getting RA–personality Type C, in particular. The author explains:
“I learned that personality also might play a role in susceptibility to disease. People who exhibit a lesser-known personality type — type C — have a tendency to appease others and suppress their own feelings, and could be at greater risk for becoming sick. I recognized enough of myself in this description to self-diagnose as an emotion-stuffing, type-C woman, apparently the perfect storm for coming down with an autoimmune disease.”
Thinking back to when I was first diagnosed, I realize that I did have a lot of Type C characteristics during that time. I was very introverted and a people-pleaser. A perfectionist at school, I got straight A’s and worked very hard at being a good, responsible student and person in general. I was also extremely shy, anxious, often depressed, and suppressed my emotions a lot. Needless to say, I hated high school and these teenage years. Could these aspects of my personality and emotional state have contributed to me getting sick? Nobody can say for sure, but I have often thought about this possibility over the years. It’s an intriguing idea.
While I agree with many of the author’s sentiments in this article, one thing I don’t exactly agree with is her view of RA not having any negative societal or cultural connotations. She says that the only judgment she feels from having RA is from herself. I’m glad to read that she doesn’t also feel burdened and judged by the outside world, but I disagree in that I do think there are loaded cultural and societal connotations associated with the disease. But for the author’s point of view on this, she states:
“I am privileged in that my disease in its current form comes without loaded cultural connotations, without shame. It is, unless you look closely, invisible. I can say its name aloud in public and not have anyone shrink away in fear or disgust. Perhaps it will one day rob me of my able-bodied privilege, and maybe it is misunderstood as the creaky disease of [old] age, but for now the ascribed meaning, the useless metaphors, the judgment, come only from me.”
The worry and fear of being judged negatively by others because of RA is something that is often on my mind, and I think it’s a real problem in our able-bodied society–especially for young people with the disease. The author of the article is right in that RA is very often an “invisible disease,” meaning that unless you revealed it, most people would not know you have arthritis just by looking at you. Invariably, sooner or later, you do wind up having to reveal your disease, your disability, and then it quickly becomes quite visible and open for judgment.
I constantly worry that once I’m forced to tell my employer and coworkers that I have RA (usually because of a flare-up or doctor appointments), I’ll be judged unfairly and considered unfit for work or the job. Or I’ll be looked down upon for missing days at work due to pain and fatigue, or taking too many afternoons off for doctor appointments. I worry that friends will think I’m blowing them off when I cancel plans because I’m too tired or don’t feel well and I can’t muster up the energy to handle the pain some night. I worry that potential romantic partners won’t want to deal with someone who has a chronic illness, and won’t have the patience or understanding to stick with me and my RA. I fear that people will notice me limping a bit, or they will see my ankle brace, or will notice that I can’t keep up sometimes and then will wrongly judge my ability or inability to be a worthwhile, productive person. Maybe I’m misinterpreting what the author is trying to say about this, but I firmly believe that there are still so many misconceptions about RA in society which does cause unfair judgment and shame for those who have this greatly misunderstood disease.
Overall, I really liked this article. I thought it was honest and engaging and didn’t sugarcoat the negative aspects of living with RA. However I felt the author’s tone was pretty cynical and I could feel the bitterness and anger lurking underneath each sentence. Being angry and bitter and depressed about having RA is completely understandable–I feel those emotions too. They are the honest emotions of someone living with this serious, degenerative disease of chronic pain. I just wish she had been able to also add a bit of hope in her message. Hope is essential when living with RA. So is the belief that remission, disease improvement, and having a good life with RA are absolutely possible.