“The Best Way Out Is Always Through.”- Robert Frost
Rheumatoid arthritis can be savage. It has many of the aspects of torture- extreme discomfort, sleeplessness, unpredictability, extremes, and the eternal questions of if and when the pain will ever stop. On my best days I view my JRA as a teacher, on my good days I view it as a mercurial imp, and on my bad days it is a demon. Arthritis sure has improved my imagination!
I’ve lived with this disease longer than I’ve had conscious memory- I was diagnosed at the age of two. I often wonder if this has made it easier, or harder to handle the strong emotions that come with JRA. What I can say is that despite being happy and upbeat by nature, I’ve spent years of my life anxious, numb, and/or depressed. This is hard to admit, and I’ve only been able to admit this to myself very recently. I’ve realized that the view of myself I hold so tightly to, the view that my JRA affects my body, but not my mind, is false. It does, and it has, and it will again.
When I worked as an occupational therapist I often took courses about chronic pain and the effect it has on the brain and mood; I always intellectually understood that there were real physiological reasons why pain contributes to depression but I rarely applied them to myself. It wasn’t until I lost my ability to work, which was a big source of my purpose, that I began to see clearly the connection between the severity of my disease and my mood.
There are good reasons I’ve been deluding myself. JRA has stolen so much from me, and the fact that it has also stolen my good mood makes me unhappy. “What good is that,” I ask myself and then try to change my mood. Living with JRA and keeping a smile on my face is important because it is a way to prove that it hasn’t won.
Dishonesty never is a good policy, however, especially when your dishonesty is a lie you are telling yourself; only by admitting the truth, can a person figure out what to do with it.
In my situation, admitting that the juvenile rheumatoid arthritis has negatively affected my mood, sometimes for long periods of time, was the first step in helping me to be more pro-active in taking positive steps to help my mood.
The most challenging aspect of the disease for me, the one that puts me into depression and anxiety quickest, is when I feel lost and alone, out of my depth in understanding how to handle what’s been put on my plate. This has happened again and again throughout my life. I’d like to say that with enough years under my belt, I know how to handle all the aspects of this disease, but RA is too complicated and mysterious- it continues to confound me.
The first thing I can do is to look back and, with clear eyes, think about what has worked in the past when I feel depression and anxiety seeping in. I also can think about the times I’ve struggled emotionally and look at what was happening in my life. The good news is that with 45 years of JRA under my belt I have a lot of material to work with.
Although I’ve never put much thought into it, when I look at the past I can see many things that I’ve done to insulate myself from depression. Despite being a more active, adventurous person, I’ve nurtured my quiet, creative side, which has helped immensely during extended periods of time when I am too ill to do much outside of the house. Over the years, when I’ve gone through long flare-ups, I’ve taught myself some Spanish, painted t-shirts and rocks, learned to make simple jewelry, settled into being a bookworm, taken on-line classes, and been a good phone friend. Given the choice, I would have rather been spending that time scuba diving or working as an occupational therapist, but since the choice wasn’t mine I made the best of my situation. Learning new hobbies or ideas despite intense pain and swelling in my body, has given me a sense of self-worth that I otherwise wouldn’t have had, and improved my mood.
Being of use is important to me and always has. When I was young, a big source of my emotional angst was the feeling of not having anything to give. In my worst moments I told myself I was a leech on society. What a thing for a kid to tell herself! So, I chose a healing profession. I’ve consciously worked at being a kind, supportive friend- especially when I’m going through hard times. Sometimes, talking to a loved one on the phone and being able to counsel them about their worries helps to relieve mine because I knew that despite everything, I was of use to someone. I now write posts, such as this one, in order to help alleviate the burden of disease for my RA/chronic pain peers. This makes me feel better about myself, and my life.
Although I grew up as a very quiet, shy kid who always answered, “fine,” whenever anyone asked how I was doing, over the years I’ve learned how to open up about what is really going on. I’ve learned that whenever I talk about something really difficult and raw, it feels awful at first, but with practice it gets easier. I’ve also realized that certain people in my life are better at hearing hard emotional truths, sitting with me when I need to talk about them, and those are the people I open up to during extremely hard times. Being discerning with whom I go to for support and counsel has prevented a lot of frustration and upset. I find that this can be situational, and even time limited, as some loved ones change and grow; I’ve learned that the conversations can change as well.
The brutal truth is that rheumatoid arthritis does affect the body and the mind; although I’m not a fan of statistics, in the case of rheumatoid arthritis, the numbers say that 40% of us suffer from depression. With a number like that, I do think that taking care of your emotional health should be a part of your overall health care plan. I can say, from experience, that when you do, your body and mind will thank you.