For 80%(plus) of my life, I have had intermittent pain and difficulty with joint pain, and – increasingly – instability, weakness, and occasionally failure (falling, dropping things). Alongside digestive issues, allergies, migraines/neuralgia and a few other things going haywire. Did I mention the “stretch marks on steroids” that have marked my skin in places like rift valleys in the landscape?
Individually, some of these issues could reliably be attributed to age, or lack of exercise (read weight), or even having low tolerance to normal pain and life events. They could be attributed to nutritional deficits. And, and, and…
However, most of the issues began when I was very young, when I was actively dancing, hiking, canoeing/rowing, and living a typical American kid’s life. I was good enough in school, had some friends, and a lot in my favor. I had beautiful skin…
Before the end of my first year in college, most of my future was in doubt. My body was working less and less well. [Additional traumas from other sources didn’t help!]
I have seen I don’t know how many types and numbers of doctors. I don’t know how many days, or weeks, or months, I lost to those visits, or the pain and difficulty with mobility. Or to the low self-esteem, the fear of “too much” activity, the anxiety of being in a place with allergens and the physical inability to get to safety.
It has been…. “ a lot” as a young friend of ours says.
Well, the tangle is beginning to unravel.
After an acquaintance nearly 11 years ago mentioned the name of a condition shared by more than one person in her family – which bore a resemblance to some of my wildly (and seemingly) unrelated symptoms. Research, and time during the health events of 2020-2022 shared world-wide, led me to believe there was something to my colleague’s comment.
In the summer of 2019 I put myself in a manual wheelchair as a way to continue to teach (the ability to teach without pain is precious). And then I tried again in the summer of 2020 to nail down a diagnosis, finally found a doctor who independently suggested I consider the same issue my colleague had suggested, only to be upended by a family member’s serious health concerns.
Then several very challenging teaching years, and this past summer my decision to try a motorized chair as the manual wheelchair was no longer a workable option if I wanted to continue teaching. Over the last few years, I have noticed decreased strength, stamina, coordination, and control even as I was actively using muscles and skills. This was concerning enough for me to try again – I reached out, again, to my primary care doctor and asked for a specific category of disorders to be investigated.
And this past November I got a diagnosis. Or part of one (still need to decide on some of the items not automatically lumped in with this diagnosis but that are often “comorbid” or statistically more likely). Now I can pursue a firm diagnosis and get a plan to address the things that can be addressed, while also perhaps finally getting some relief, “permission” or at least approval for both current and future mobility and other supports.
Let’s be clear: it should NOT have taken this long. Although what I am experiencing is unusual it is not that rare, and should not have seemed so mysterious to medical professionals. However, for now I feel vindicated: this is not imagined, I am not exaggerating, I am not lazy.
For those of you who are accused of malingering as some have said in my presence (and as one great-grandmother was; right up until I saw a copy of the death certificate a hundred years later and realized that she must have been in terrible pain for years before dying of sepsis from a surgery that should have helped…); I see you. You deserve comfort and rest, you deserve interventions, or medications, or aids that will allow you to be productive and enjoy life.
And for those of you whose insurance and financial status prevent you from seeking either diagnosis or treatment, I hope that you will get what you need sooner than I did.
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