(Not) Sleeping With the Enemy

Spike, seven years after his diagnosis with Addison’s, improbably snoozing

If you have only one spoon today, I’m honored that you’re using it to read this. If you are fortunate enough not to know what “spoons” refer to, I’ll briefly explain that it’s a subjective unit of measure for people with chronic pain and fatigue issues, or other hidden illnesses. I’d like to share some thoughts that came up when I recently got some reader mail thanking me for writing about my experience beating fibromyalgia. (I see you! <3)

It puzzles me that virtually all of the online presence for invisible illnesses seems to be about emotional support and painstakingly tutoring “well” people in the details of our diagnoses. Aren’t we... trying to feel better? Shouldn’t we see a disease as an opponent, not a roommate or a spouse? Shouldn’t we be trying to GET MORE SPOONS??? Stop sleeping with the enemy and tell it to pack its bags because it is out of here.

First off, the concept of chronic illness drives me crazy. I believe that it is unscientific for a doctor or anyone else in the medical community to describe something as “incurable.” Just because nobody has cured it YET doesn’t mean it will never happen. Isn’t your entire job to try to cure and treat illnesses?

I’m pro-science. Let’s not get confused about that. I always get my flu shot and I’ll promote vaccinations to anyone who will listen. If a doctor gives me a prescription for antibiotics, I fill it and I take the full course. If I get a printout of instructions to do physical therapy exercises, or anything else, I follow those instructions. I’m obedient and open to input. This is why it upsets me so much when I’m treated with condescension by doctors.

The doctor who patted me on the shoulder and assured me that there were in fact zero ways I could modify my diet, exercise, or lifestyle to impact my thyroid disease. - FALSE

The doctor who told me he doesn’t “believe in germ theory” - UHHHH....

The doctor who told me I must have been misdiagnosed because “people don’t get better from fibromyalgia” and she knew, because her sister-in-law has it. She told me not to mention that diagnosis to doctors, because they would “automatically write you off.” Then she tried to prescribe me an anti-depressant, although I am not depressed. - HUH?

The point I’m trying to make is that just because you waited forty minutes for a fifteen-minute time slot with one overworked, obtuse physician who wasn’t able to help you, does not then mean that you are beyond help. Just because you’ve suffered for many years doesn’t mean you always will. Just because your pain is extreme does not mean it will always be that way, or that it will get worse. There are no reasons to believe that a physical illness will remain permanent and debilitating until the end of time.

I always felt that if I had to suffer, then let it be toward a purpose. Take notes on my condition and track my metrics. Record everything I tried on my search for relief and wellness. Use these notes to build a better treatment plan for the next generation of sufferers.

Then I take that attitude to my primary care physician, who invalidates my position. I’m game, try me! How many people like me constitute “anecdotal evidence” that is 100% disregarded by the medical community? How many more are laboring under false stories of sickness because this information is withheld from them?

I was diagnosed with fibromyalgia at age 23. I also had a thyroid nodule that disappeared without treatment. I suffered debilitating migraines for about ten years. I would say that I actively manage sleep issues that began 35 years ago, and I’m successful now about 90% of the time. Since then I’ve run a marathon, completed a mud run, and gone on several multi-day expeditions carrying a 40+ pound backpack. Now I’m studying the martial arts of Krav Maga and Muay Thai kickboxing. Four hours a week I repeatedly catch kicks, punches, and shoves, get thrown onto the ground, and do a full circuit-training workout. If I can think of any more extreme sport that demonstrates how fully I beat fibromyalgia, I might try it.

I’m a middle-aged woman with a history of multiple chronic illnesses. I crushed them.

I’m a formerly obese woman who fully recovered from thyroid disease. Now I wear a size XS.

How is it possible for someone of my age bracket and health history to be in better shape than I was twenty years ago?

How is it possible, when my doctors told me it wasn’t? How is it possible, when my doctors brushed off and invalidated my experiences? How is it possible, when I never took medication or had surgery?

There are three reasons.

First, I didn’t have a choice. My ex-husband divorced me when he realized how sick I was. I didn’t even have health insurance, much less another human who could help me get out of bed or fill in for tasks I couldn’t do. I had to get up and take care of myself because I was the only one I had.

Second, most of my insights and epiphanies and realizations and hypotheses came from TOTAL ACCIDENTS and coincidences. I would notice something that didn’t seem to make sense, and as it caught my attention, I would start to track more details while I tried to figure it out.

Third, being told that something is impossible is something that deeply annoys me. It’s stupid! It’s a wrong thought. It is unscientific, if I might be pardoned for repeating myself. I’ll trust a doctor who tells me to get a tetanus shot or change bandages or take eye drops. I’ll never, ever trust a doctor who tells me I’m stuck with some health condition for the rest of my life.

Nobody needs to run an obstacle course or go backpacking or start taking karate classes. That’s a high bar. All I’m asking is that we question this chronic illness paradigm. I ask that we allow for the possibility that we may one day be free. What if we’ve been misdiagnosed? What if we become “anecdotal” and have a spontaneous remission? What if we age out, as it often happens with migraines, because our hormone levels change over time? What if new research leads to new treatments, new medications, or new understanding of root cause?

Please stop sleeping with the enemy. Illness is not your body part. Illness is not one of your internal organs. Illness is not your heritage. Perfect health is your birthright. Track your metrics and keep asking questions until you have all the spoons you could ever want.