In part 1 of 'Are You Defined By Pain?', I wrote about the subject of coping with pain in a generic, impersonal way. In part 2, I describe my experience of defining myself by pain.
Earlier this year, my doctor prescribed a pain patch called BuTrans. (See Part 1 of 'Are You Defined...' for details on BuTrans). Within one week of usage, the fibromyalgia pain was completely under control and I was pain-free. It seemed too good to be true. In hindsight, this was partially the case. After six weeks of using the lowest dosage, I began to experience breakthrough pain and eventually required a higher dose.
During those six pain-free weeks, I was beyond thrilled to live a 'normal' life. I wanted to rush out into the world and make up for every moment lost to chronic pain. Living a pain-free life is a goal that any suffering person strives to attain. But after one pain-free week, strangely enough, I started to look at myself differently. Unexpected thoughts and feelings crept into my mind. It dawned on me that I had been seeing myself ONLY as a 'fibromite', a person living with chronic pain, or a disablility. While on the patch, I still had fibromyalgia but I experienced no pain Suddenly, I felt the need to redefine myself as a person. I held the Holy Grail in my hands but I didn't know how to drink from it.
Don't get me wrong - to be out of pain is a GOOD thing. But, it began to occur to me that I had somehow let fibromyalgia define me as a person. Everything I did in my life seemed to revolve around fibro. Illness had somehow become a 'hobby' in my life: everything I read was about fibro. I wrote about it. I talked about it. I subscribed to fibro newsletters and magazines. I attended workshops. Of course it's normal to want to educate yourself on your illness. Knowledge is power. At some point, I had crossed a blurry line and the illness had become an extension of myself. Without it, I had lost a part of my identity. And that bothered me. A lot.
I knew this kind of thinking was totally neurotic. But I suspected that I wasn't the only person who had experienced this unsettling self-realization. How had this transformation happened? I felt crazy, ungrateful and ashamed of myself. How had I let myself be defined by my illness? More importantly, why?
I'm not a psychologist and I don't have an adequate answer for this bizarre thought process. I knew that I didn't like it one bit. I also knew that I must look within for answers. Soul searching is not an easy, breezy exercise. I had to ask myself some uncomfortable, painful questions and I was afraid to acknowledge the answers. It's far easier to stay warmly wrapped in denial and blissful ignorance than to dig deeply into your psyche.
I discovered that, to some extent, I had been hiding behind fibromyalgia. But why? I can only guess that it had much to do with low-self esteem and feelings of helplessness. The source of these problems orginated from too many traumatic and unresolved childhood events. As a result, I was far too comfortable wearing the victim role.
I've never had a strong sense of self, but one thing I've had in spades was frequent weird illnesses, syndromes and surgeries which began at age nineteen. I suppose it's safe to say that is where my identity likely became intertwined with life as a 'professional patient'. It's probably not a coincidence that I married a doctor.
When you live with a chronic pain condition, it's not that you don't WANT to cook meals, keep house, be employed or hang out with family and friends. You no longer do these things because you CANNOT do them - at least on bad days. I made another disturbing discovery. Even though, I was in pain, I had gained a secondary benefit from not having to do these activities. This is not to say that I was faking or exaggerating the pain. Far from it. But I saw that it could potentially become all too easy to opt out of life even if I wasn't having a particularly bad day, but merely an off day.
It goes without saying that I don't enjoy having fibromyalgia. I hate having pain as much as anyone else. I'd like the pain never to make a reappearance. The reality is, the pain will likely return, then settle down only to come back again. It's the baffling unpredictability of fibromyalgia.
Having fibromyalgia has given me much more than a literal pain in the neck. It has provided me with the opportunity to meet and grow to love an extended, online family. I no longer hide behind my condition. I don't have to be ill to have an identity or importance. At fifty-one, I now identify myself as a writer and an artist. I'm also a mother, a sister, a wife and a person who lives with a chronic condition.
I am much more than a syndrome. And so are you.