I recently read a new Abstract published in the “Journal of Internal Medicine” on POTS. It was written by a wonderful POTS Specialist, Dr. Arthur Federowski, all the way from Sweden. The Abstract is full of incredible and well detailed information and research, I might go as far to say that it’s the best document I’ve ever read on a detailed exploration of POTS.
In it Dr. Federowski writes: “The long-term prognosis of POTS is not well explored. It is estimated that around 50% of all POTS patients spontaneously recover within 1-3 years of diagnosis.”
…ouch that stings.
Next month marks the six year anniversary of my accident, the literal downfall of my health, and the ultimate reason I even find myself here typing this blog still today. So I guess in short I clearly am not part of that “around 50%” category.
…ouch that stings.
I’ve never allowed myself to be oblivious to the fact that my diagnosis is rather complex, and different than most POTS patients. I mean come on not everyone diagnosed with POTS fell 10 ft headfirst onto a basketball gym floor, and thank goodness for that! Therefore I obviously don’t fit all of the usual statistics and research, however after reading what felt like an exact autobiography of the last six years of my life, its still a bit difficult to read that part of information. Of course there are plenty of other POTS patients that “fall “(whether literally or figuratively – lol) into the other 50% category with me. I don’t wake up everyday hoping it might be the magical day that I am miraculously cured and join that category, but I would be lying if I said I didn’t think about the possibility of someday living without POTS.
With that being said I am incredibly thankful and tremendously lucky that in the six years since my accident I have recovered and healed as much as I have. I very strongly remember the days sitting on my moms office floor home schooling myself, wondering if there would ever be a day in which I actually returned to real school, let alone graduated high school. In my last year of schooling now for my career those days seem so distant and long ago, almost a foreign memory, yet they were all very real and possible outcomes to think about at that time. What would I do if I was not able to return to school? What would my life look like if I was stuck in my wheelchair for the rest of my time on earth? What would my quality of life be?
In my current days my diagnosis of POTS only occasionally makes an appearance in my everyday thoughts, it no longer consumes my every minute, and no longer seems to drown out all other thoughts. While this in itself is comforting to realize, I do still occasionally ponder the thought of a day occurring when it no longer enters my mind and how it has made certain situations different, but is rather just a distant memory of my past.
I’ve talked a lot on this blog about learning how to readjust to life after being diagnosed with a Chronic Illness that controlled most aspects of my daily life, and then learning to readjust again as my health improved and I gained a new sense of freedom I had forgotten I once had. While the physical aspects of a POTS diagnosis are incredibly difficult, painful, heartbreaking, and overall life changing, I think the emotional impact it leaves a person with are far more altering than anything else.
When I could no longer walk independently I found a way to fix the problem- I learned to adapt to using a wheelchair (shoutout to Bernard the Blue Chair that allowed me a years worth of participating, I might not have had without him). When the suggested lifestyle changes and dietary supplements didn’t work I found an alternative treatment- I accepted relying off of medications daily to function. When I was too weak to physically attend school I sought out a different option- I adjusted to learning from home. All of the physical problems had answers, and when there weren’t answers, there were other solutions available to manage the physical impairment. The physical disability aspect of the diagnosis never truly disabled me physically, it just provided road blocks along the way that I had to learn to navigate and adapt to.
that stung at first, but then it healed…
However, when I realized that a significant portion of the initial two years after my diagnosis was a time that I was unable to remember, and recall, there was no way to fix that and bring those memories back. To this day I still have only a handful of recollections from that time. When I sat in numerous doctors offices and listened to them explain to my mom and I that what I was experiencing was no more than a psychological problem, I believed them. There was no way to undo what had already started to be engraved into my mind. Yes I now know otherwise, and that they were incorrect, but I was told for so long that I was wrong, that I began to consistently question if others knew my body better than I did myself. This in turn produced a constant feeling of needing to second guess my everyday feelings and thoughts, and a desperate need for someone else to validate the thoughts so that I could be confident I was right all along. Something that still to this day I struggle with the most. When I thought the only alternative to suffering with POTS was to end my overall existence, I truly considered it. There’s no going back in my life now and undoing what I lead myself to believe then. When I explained for four years, and still do to this day that POTS is not an imaginary made up condition, I question whether people believe me. None of these things had alternative options. There isn’t any way to undo the memory loss, I can’t take back the doctors words and reverse the impact they have, there is no going back in time and assuring myself that someday I would find an answer, truly knowing people believe me and understand isn’t a thing. These things still stay. These things always will stay.
that still stings, it won’t ever fully heal…
Do you ever truly spontaneously recover, no matter how many years it takes?
Do you ever truly regain the entire Quality of Life you once had before?
Does it all truly just reverse itself, all of it; physically, emotionally, and mentally?
I might not be the 50% that got to wake up within 1-3 years after their diagnosis and gain their physical quality of life back they once had. I might not ever regain this. And yes it stings, it stings deeper than any swarm of bees, jellyfish tentacles, and all the other things that sting. It probably stings worse than Godzilla would if he could sting (Is “he” even a “he”?).
But I believe that in the end regardless of ones physical recovery, they will always struggle with the emotional recovery, in whatever way it presents itself, for the rest of their life. Because I don’t believe there is a wheelchair, a magic pill, or an alternative path to take in recovering from that.
But I also believe that Quality of Life is entirely what you make of it. Maybe had I believed the first ten doctors I would have made the choice to no longer exist anymore, or maybe I would have learned to find ways to continue to seek out the joy in life, even if it was all just “in my head”.
It’s almost been six years and I haven’t spontaneously recovered, but I’ve learned to deal, and most importantly I’ve learned to live with it. POTS may always physically be a part of me, I may never join the other 50% and that is okay, because as long as I continue to seek the joy, no matter how hard that may be sometimes, I am still living, even thriving. And no amount of physical limitations can take that away from me.
While I will forever be incredibly grateful for all the hard work and dedication that goes into continued research for such a desperately needed and uncharted diagnosis, I will always remember that statistics and percentages are just that. They are not Quality of Life determinants. They are not emotional prognosis’. Those are things that can only be made by the diagnosed individual, and how they decide those things is entirely up to them.
While this month stings a little extra than others, it is also an incredible reminder of how lucky we each are to undergo trials, and hardships, and to ultimately dig deep and find our will to not only live, but to thrive.
So amidst all the emotional hurdles life has created for you, whatever they may be, don’t define yourself by the numbers, dig deep, and create your own.