This past weekend marked the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) like myalgic encephalomyelitis, Gulf War syndrome, chronic fatigue syndrome, and fibromyalgia fall under the rather broad CIND banner. Since 1992, May 12th has been a day for groups and organizations that focus their energies on advocating for and supporting folks with those illnesses to amplify the visibility of these communities and to issue a call to action.
This year, the National Fibromyalgia & Chronic Pain Association declared a theme for May 12th: “Your Voice Matters.” As it turns out, this theme happens to be exactly what I needed to hear: I spend a lot of time actively avoiding talking about my experiences so far with fibromyalgia, in no small part, because I don’t want to be thought a whiner or to make other people uncomfortable. But my voice does matter, and so does my experience, and my experience certainly isn’t confined to one calendar day. For me, and others like me, every day is Fibromyalgia Awareness Day.
Though I’ve only been recently diagnosed with fibromyalgia, I’ve been living with it for years—not just as it has played merry hob with my body, but during the years prior when it started messing with my mom. Coming to terms with being chronically ill is a process and, at this point, I’m not entirely sure there will ever be a point when that process is complete.
You know that long-accepted, if not wholly accurate, concept of the stages of grief? The way it is talked about, you’d think it is a linear process and that you progress from one stage to the next and, once you’ve baby-stepped your way through all the stages, you’re done. That is a lie. That is untrue for grieving the loss of a loved one, and it’s untrue for grieving the life you thought you were going to have before you realized that you’re chronically ill: I am often bouncing back and forth between anger and bargaining with my body to just let me do a little more today, with a little bit of tentative acceptance thrown in the mix.
I watched as my mom went through her period of denial, one that I experienced years later, albeit with its own distinct flavor. One of my mom’s sisters is a drama llama who seems to live every day as if it were a stage production. She was our introduction to fibromyalgia; but it wasn’t just “fibromyalgia” it was “fibromyaaaalgia.” That’s how she said it—she made it sound as though she was in desperate need of a fainting couch. It seemed like was meant to make you feel sorry for asking anything of her.
For the longest time, my mom struggled with accepting that she had fibromyalgia, not just because of the limitations or the chronic pain or the chronic fatigue, but also because she did not want to have “fibromyaaaalgia.” Years later, I felt myself fighting my new reality for much the same reasons; I’d find any plausible excuse for my pain: old sports injuries, carpal tunnel syndrome—it could be almost anything, just not fibromyalgia. It took watching my mom reach a point of acceptance and making my own connections with friends who also have fibromyalgia for me to accept my body and my reality without metric tons of self-loathing. I still often downplay the amount of pain I am in or how tired I am because I don’t want to people to see me as constantly complaining or, worse, “crying wolf.”
By and large, fibromyalgia is invisible; though it has been getting a little more public attention of late, many people are entirely unaware of what it is and what the symptoms are. It’s not something you can just run a blood test or buccal swab for; a fibromyalgia collection of symptoms and diagnosis is basically made by ruling out everything else—imagine a House, M.D. episode with a run time much longer than an hour (though you might get to hear, “It’s not lupus.”). It is a long, emotionally draining process, wherein you’re often stuck engaging with people in your daily life who don’t believe you—the “but you don’t look sick” camp—and a medical system that often looks at you as though you’re a drug seeker. Further, clinical depression is one of the comorbid conditions that are just part of the whole fibromyalgia package—it really is one of those gifts that just keeps on giving—and the whole crappy process of getting a diagnosis does not help. Beyond that, because not everyone presents with fibromyalgia in the same ways, which makes the process of diagnosing even more challenging.
One of the main symptoms of fibromyalgia is “disordered pain processing.” For whatever reason, my central nervous system processes pain all the time for no immediately identifiable reason: even on a really good day, I am still in pain, just less. It is exhausting. Even though I’m exhausted from being in pain all the time, the pain and the accompanying sleep disturbances often keep me from sleeping well, so I’m always tired.
But wait! There’s more! Being tired further throws off my ability to process pain, so I hurt more when I’m tired, which then makes it harder to sleep, and so on. For some people, the symptoms are so severe that they interfere with daily life. Others experience flare ups during which the symptoms are debilitating, but are typically able to manage and work around their symptoms the rest of the time. Stress is almost universally recognized as a trigger for a flare up; so, with almost any life change or life event, you can pretty much expect to deal with worsened symptoms.
Living with fibromyalgia means I have to choose, on a daily basis, what is worth fighting through the pain and the fatigue to accomplish. I have to prioritize where to place my energy in ways that most people take for granted: do I shave my legs in the shower? Or do I use that energy to scoop the cats’ litter boxes? Or do I make a run to the store for that thing I forgot the other day (because fibro fog)? More often than not, I can make it through a day and get several things accomplished, but it always requires making those kinds of decisions and always comes at a price. On bad days, the choices get harder and the guilt about not being able to just do things is much worse, especially when you’ve internalized the voice of those folks who insist that you’re making it up, that you’re just lazy, that it can’t be that bad, or that “at least it’s not terminal, you should be grateful.” In a society that puts a high premium on self-reliance, needing help is viewed as a failure of character and it is incredibly difficult to not internalize outside assumptions of failure and worthlessness. There have been times when I have overexerted myself because I got fed up and just wanted to be normal.
I don’t want this whole thing to be a downer: my life isn’t over and I’m not constant misery wearing a person suit. I love spending time with my family and friends. I laugh often. I still look at the beauty of the world with wonder. I play with my dogs. I work on a lot of DIY projects. I hula hoop in my living room and, occasionally, do cartwheels in the front courtyard. What’s more is that I’ve been able to enjoy those things and more since I finally received a diagnosis and started working with my doctor to treat and manage my symptoms. It is still hard. It’s hard to be tired and in pain. It’s hard to learn what your new limitations are. It’s hard to fight your way through the medical establishment to get the treatment and assistance you need. It’s easier when you have a support network of people who want to understand and help. It’s easier when you can find voices that shout into your days of self-doubt, “I see you and you’re not alone.” These are a few of the resources that have helped me to better understand my diagnosis and reassured me on dark days: