I have fibromyalgia. Fibromyalgia is thought to affect around 20 million people globally. Because the symptoms can be similar to other disorders, often a sufferer has been through a multitude of testing, seen a multitude of doctors, had hopes raised and dashed a multitude of times. Diagnosis may follow years of seemingly inexplicable and incapacitating symptoms. You may experience the complex mix of relief at being told there’s a name for what you’re enduring, and the disappointment that there is no cure or consistently effective treatment.
In other words, you’re in shock, you’re scared, and not a fun horror-movie night scared. You don’t know what to expect next.
That’s where I was well over a decade ago. My initial disclaimers are thus: Fibromyalgia is a very personal disease. While the cluster of symptoms is the same for every sufferer, the particular symptoms that affect you most and how they will affect you will differ. Some people will need to stop working at some point, while others are able to continue in their careers with accommodations. Looking to other people to measure your own symptoms will only lead to fear and frustration. Look to the lessons and not the particulars of anyone’s story.
The Emotions of Severe Chronic Illness
In my case, it was obvious early on that my life was going to change drastically. Pain was slowly preventing me from sitting at a desk, concentrating, even sometimes driving. But worse was the massive, crippling fatigue that took me to bed (and not in a good way). I cycled through the various available treatments in a short period; most were ineffective for my symptoms, while others triggered Dante-inspired stomach problems that only added to my impressive woes. Depression is often a part of the cluster of FMS symptoms; it took me a while to realize that depression was also grief. I had worked my entire life, sacrificing the experiences normally accompanying high school and college, to secure a place at the top. What was I without my hard-won, soul-crushing career as a lawyer? My life had been about accomplishment, and I didn’t know how to separate that from my very value as a human being.
It is natural to find yourself grieving for the life you had, and experiencing that grief may be important toward healing. But so is relearning what constitutes a valuable person. Are you telling yourself that if you aren’t balancing 20 activities, if you’re not at the top of your career, if you’re not chauffeuring your children to every possible activity, that you’re not a valuable person? Stop it. This is good advice for many alienated members of society. But it is especially important for a chronic illness sufferer.
In the United States in particular, that good ol’ Protestant work ethic (and doses of Catholic guilt?) has served even to this day to connect personal value with achievement. We compete for the fewest hours slept, the most stressful activities, the most neglected health. Stopping is laziness, and laziness is a worse sin that putting ketchup on your scrambled eggs.
Maybe you recognize my story. You may feel shamed and may carry internalized shame about slowing down to a pace that is healthy for you. Even as you try to focus on the positive, you hear or imagine you hear the voices of your bosses (with their own broken marriage and lousy relationship with their kids to show for their career obsession), your neighbors, strangers. In time I hope you will learn that your most important role is to be good at your new job: to care for yourself.
My life is very different now. During good periods of time (times when I’m not fighting chemical depression), even an unusually perky hour, I seize life. I channel my inner warrior-princess. I try to enjoy everything outside of my pain. I try to live with gratitude. For warm baths, hot chocolate, and fires in the winter. For the comfort and affection of my pets, even when they think swarming or tackling me is an appropriate treatment for what ails me. For the rare meal out, for another night of not moving in front of the television, for the strength to do the dishes. There’s no doubt I will often falter, but now that I recognize that I am a whole person, many happinesses are possible.