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How Fibromyalgia Has Me Constantly Redefining Pain

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Once upon a time, before fibromyalgia started reading its ugly head, I had certain ideas about what pain was. Pain was a concept, mostly distant, mostly abstract. It was not something I had to deal with very often. I thought I had a pretty good handle on what pain was, what being in pain really felt like and what it meant, as I’m sure most people do. But the thing about chronic pain is that it has completely changed the way I think about and define “pain.” Maybe the reality of pain can only be realized when pain is your reality.

I used to think of pain as something temporary. In fact, to me, it was one of the defining criteria. Pain was supposed to be a momentary sensation. Some moments might last longer than others, but they would always pass. I didn’t even know what “chronic pain” was, nor had I ever given thought to what it meant. Diagnostically speaking, “chronic” refers to something that occurs consistently and persistently for at least three months. That is one long moment. And while the intensity and the types of pain I feel are always changing, I am indeed constantly experiencing pain. That’s not something I was able to wrap my head around before I was actually living it. Even then, it took months for me to take what I was feeling seriously and to admit even to myself that I had been in pain for a long, long time.

Another belief I held about pain was that it should have a reason — ideally a good one. My relationship with pain, such as it was, used to be a healthy one; Pain wasn’t necessarily a bad thing, as it served an important function. Pain existed to alert you that something was wrong and that something needed to be done to fix it. I likened it to the way fear existed to help us steer clear of danger. Pain and fear: both physiological responses, both interconnected, both necessary functions. It really turned my world upside down when I started experiencing pain as something chronic. It didn’t help when I also started struggling with anxiety. These firmly held beliefs that I had never even considered questioning were suddenly thrown into doubt. That doubt lasted until I finally got answers, leaving me in a sort of anxiety limbo for years.

Even after I finally received a correct diagnosis, it took time to reconcile with the idea that the pain I was feeling didn’t have a reason. Certainly not a good one. I’m still struggling with it, and probably will for the rest of my life. Because the pain I feel, medically speaking, is all for nothing. Pain is supposed to be a symptom caused by something else that is wrong with the body. For me, pain is what’s wrong with my body. (Not to oversimplify; there are a constellation of other symptoms that make up fibromyalgia, pain just being one of the more debilitating ones.) As difficult as it is to come to terms with chronic pain, add to it the fact that no one is exactly sure why I’m feeling it, or even what fibromyalgia is, exactly — what I’m saying is that it sucks. The fact that I can’t understand my pain scientifically makes it that much more difficult to try and understand it emotionally, and emotions are hard enough to understand as it is.

Experiencing chronic pain also has me constantly expanding my definition of what being in pain actually feels like. This is another big reason it took me months to admit that what I was feeling every day was, in fact, pain. I had such a narrow idea of the sensation of pain; there was the soreness of overworked muscles, there was the ache that accompanied an illness like the flu, and there were sharp, fleeting pains from things like a cut or a bee sting. Living with pain, all kinds of pain, every day, I realize that pain can be so much more. Before the pain I was living with finally developed into something I recognized as pain, I suffered through so many sensations that I didn’t have a name for. In my mind, I referred to it as “excruciating discomfort.” I was so hesitant to say, even to myself, that I was in pain, that I hurt. I’ve experienced so many strange, uncomfortable, and intense sensations that I now understand as different kinds of pain. Every now and again, a new one will catch me off guard, and my definition of “pain” expands that much more.

Pain can be a lot of things, and feel a lot of different ways. But even as changeable as it is, it can also be something very constant — not fleeting, not so temporary as I once believed. Pain can last for days, months, years, a lifetime. Mine will. And pain doesn’t always have to have a reason. Just as bad things happen to good people, so too does pain. Maybe what has changed the most about my relationship with pain is our closeness. Before, I didn’t think about pain any more than the next person; it was just an occasional part of life. Now, I think about pain every day, because I have to, because every day, pain is a part of my life. Pain and I go together, and that’s just the way things are. I understand pain a lot more deeply than I used to, and as a result, I probably understand myself a lot better as well.

Getty image by Sky_melody.

Originally published: June 18, 2019
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