Why is Mental Health The Red-Headed Step Child Of RA?
When I was younger I loved libraries. I loved getting lost in books and doing “research.” This was long before the internet changed the information world so dramatically, and my thirst for knowledge always took me to the library. Lucky for me, my Dad was a professor at New York University, and back then I was allowed access to the 12 story Elmer Holmes Bobst Library so, whenever I could, I would go to NYU with him and hang out at the library while he taught.
One day I was researching rheumatoid arthritis and I came across a 1964 article in the journal Arthritis and Rheumatism that gave me pause. The article talked about the “hysterical tendencies” of people with RA. It stated that people with RA scored higher in areas like hypochondriasis, repressed anger, obsessive-compulsive tendencies, and anxiety, often leading to the symptoms of the disease. I thought it was a bunch of malarkey and it made me steaming mad. What made me mad was only in part the certitude in the way that the information was presented. More than that, it was the fact that I knew that I was struggling emotionally and reading this made me feel less safe in my ability to talk about it. After reading that article I made a decision that would negatively affect me for many years. I decided to suck it up and not talk about my fears and anxieties because I was so afraid of being labeled or blamed for my perceived shortcomings; I was blaming myself enough at that point. I was 13 and quite alone in my angst. A year later I developed anorexia which was directly related to my inability to talk about my emotions around the JRA I lived with. It took 15 more before I sought help for my mental health.
Fifty years after this article was published we have come a long way in our understanding of the relationship between physical and emotional health. We know that physical pain triggers the limbic system, our emotional brain, to create negative feelings, which can lead to depression and suicidal ideation. We know that loss of function can affect self-identity and self-esteem negatively. And we know ways to buffer against these outcomes, by creating positive connections, fostering altruism, and learning new skills to replace the functional losses that people with RA inevitably experience. But like a lot of medical knowledge, putting knowledge into practice takes time and, in my opinion, the practice of rheumatology has a long way to go in order to best help people with RA deal with the negative emotional aspects of the illness.
These days when I go to the doctor I will get asked whether I feel safe at home and whether I’ve had any thoughts of suicide over the past month. Usually the nurse asking me will act a bit uncomfortable, often speaking in lower tones, or very quickly, as if she is embarrassed by the questions, and I find myself answering in an extra chirpy voice, “YES! And NO!” We both act as if we want to get that part over so we can get to the real visit. After my visits, I often wonder what would happen if I answered differently, admitting that at times I think I would welcome an end to my pain. I wonder why both of us are still so uncomfortable with talking about the emotional aspects of illness, even when it is common knowledge that they are intertwined. And I wonder when this, if ever, will change.
Emotional health is paramount in being healthy physically. And living well with chronic illness can’t happen unless we feel healthy emotionally. It took me decades to fully figure this out, and even longer to prioritize my mental health. Now that I have, I’ll never look back. I remember being 13 and refusing to talk about how I felt other than my standard answer of “fine.” I will never forget what that did to me, and the years I lost to anorexia as a result. And I am proud of myself for finally moving past my fears and beginning the process of healing emotionally. I am so, so glad that I’ve found my way to a place where I can fully own my emotions and understand how they affect me physically.
Ironically, I recently found that 1963 article again and re-read it. In doing so I realized that I never did read the full article; I’m guessing that the first few paragraphs bothered me so much that I couldn’t go further.1 Instead of solidifying the views of the time, at the end of the article it questioned them, stating that you can’t discount the idea that physical symptoms influence emotional health. Reading this now I wonder if this was the beginning of the shift in medical thinking around emotions and RA and I wonder what would have happened if I had read the full article when I was 13. Would it have changed my thinking enough to have changed my behavior? Would it have helped me to help myself at a younger age? I’ll never know, but what I do know is that my life now is healthier because I place just as much, if not more, emphasis on my emotional health than I do my physical health. I know that I am stronger than stigma, and I will never let anything stop me from getting help when I need it ever again.