A quarter of us have chronic pain. That term, chronic pain, is loaded. Each victim has a different interpretation. Its manifestation, definition, diagnosis, and struggle: unique to everyone. What is true is that it affects everyone: symptomatic or not.
This is a subject I’ll probably write a good bit about as time goes. I have fibromyalgia, a diagnosis largely from omission. It began, as far as I can tell, during adolescence. After years of accepting it as normal, it took finally meeting a doctor with enough experience, curiosity, and patience before I realized just how abnormal it was to struggle everyday to get out of bed, to stay awake or asleep, to sit without collapsing onto myself. Particularly during the years I should be most physically vibrant.
Originally diagnosed as myofascial pain syndrome (a related condition) during my early 20s, as it had centralized itself primarily between my shoulder blades, it has since evolved into full blown fibromyalgia. It is a hijacking.
Curiously, I am used to my body hijacking itself. As a lifelong stutterer, my brain and mouth already perform acrobatic feats of incoordination. The pain is more mental, some emotional, but not unphysical either: the chaos occurring within a stutterer’s mouth, throat, chest, and abdomen can be Olympian in their objections to fluency.
With fibromyalgia, the manifestations are even wider and trickier. With it oftentimes being a diagnosis of omission, one that often is determined after years of medical trial and error, the resulting conclusions run the gamut.
Symptoms are everything from deep fascia pain, heavy legs, and chronic fatigue (like mine) to irritable bowels, TMJ, anxiety disorders, depression, cystitis, neuropathy, among other things seemingly unrelated. These are the physical manifestations: some hidden and devious, some explosive and blundering.
What rarely gets discussed is how this is communicated to those around us. How do we describe feeling tired without looking lazy? In pain without an easy: “take an ibuprofen”? Utterly weighed down without looking unhelpful, unattractive, or non-participative? As complicated as the condition is to those experiencing it, it is likewise to those experiencing its ramifications.
I am weaning off of pregbalin (brand name: Lyrica) after several years. Has it helped? I think so. But after a recent large scale study linking it to dementia, and being someone who has dementia in my blood, I decided I had to make a run at it. This wouldn’t be the first time. I tried this very process a couple years ago, prior to the study, for no other reason than I wanted to see how much it was really helping and to perhaps take less medication (I also take low dose naltrexone, sertraline, and a statin). It did not go well. This time around, I am trying to help ease the step downs with microdosed combination THC and CBD. It is helping.
During this process I’ve had to be open with my family about my experiences with fibromyalgia in ways I never have. My kids certainly not. I have had to explain, in detail, how the condition affects me day to day and how it may change as I work through this transition. I’ve been relatively stable the last 7 or 8 years. The medication combo plus regular cardiovascular activity, one way or another, has mitigated the most extreme symptoms. That’s not to say they’ve been erased: far from it. But I feel more in control. More able to adapt to it rearing its head. More able to beat it back.
My wife and kids understand that I may be grumpy. Ok, grumpier. They may see me laying down for no particular reason. They may see me with my eyes closed, focused, mentally pressuring my body to stay in line. This isn’t easy for me, and it is not easy for them. But they are tuned in, aware that dad/Justin may be elsewhere from time to time. Luckily, he will be back, perhaps with an apology in hand.
I write this because I think it’s important we give this part of ourselves to those we love, even if we don’t fully understand it ourselves. We don’t have to be infallible experts for our kids. We just need to be there. Showing weakness lets them be weak when they need it. Showing recovery validates their comeback. Whether or not they experience this condition in their lives, and I hope to God they don’t, they’ll at least know that it is OK to be burdened. To struggle. But it is equally important we let those around us - those that love us - in on it. They’ll likely need the support more than we do.