How a Chronic Diagnosis Leads to the Deconstruction of a Life

Looking back, it seems so innocuous: I’ve put a lot of wear and tear on my feet through my outdoor adventures, and I aggravated a prior plantar fasciitis injury. Two years later, I found myself stunned as I absorbed the reality that I had a condition that would affect me and impede me for the rest of my life.

A diagnosis of a chronic condition can be traumatic. No, not one like high cholesterol that requires swallowing a statin and then diving back into the steak tips. But a big one. In my case, fibromyalgia: brain function and chemical changes lead to essentially a permanent fight-or-flight response that often results in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy, and the list goes on. But whether it’s this or others that could range from multiple sclerosis to bipolar disorder, from ankylosing spondylitis to alcoholism, from epilepsy to PTSD, there is one very stark reality that accompanies the acceptance of that diagnosis: the need to deconstruct your life in order to reassemble it in a way that addresses your new limitations. 

Drawing my blood turned out to be the easy part.

Conditions such as these aren’t cured with a pill, a pat on the head, and going on your merry way. Instead, they inflict both obvious and subtle problems long after you’ve left the doctor’s office. The obvious struggles include experimenting to discover the medicines and treatment regimens that provide clinical relief to get you through the worst moments and to stabilize you. That requires time, side effects, setbacks, failed attempts, crushed hopes, and a diminished quality of life.  Sometimes, that seems to me to be the easy part.

The harder part is accepting that you can’t live in the way you’re accustomed. For me, I’d already spent years working to be the healthiest and best me that I could be. I’d established a lifestyle and life  that I loved. I was happy, and bouncing between living in the moment and dreaming of my next immersive adventure. But now that’s all gone. The only thing I know at the moment is that I can’t really live that way anymore; living in the moment is currently a fantasy.  I need to be cognizant of my condition – all the time: I need to carefully start the day off. I need to religiously take my prescription and supplements. I need to eat militantly. I need to exercise. But I need to not exercise certain ways. I’m stressed by my need to avoid stress whenever possible. After an exhausting day, I then need to sleep delicately to try to make it through the night.  The list goes on and on, and when I deviate I pay the price.

But, in addition to all of those efforts, I also need to now examine my prior lifestyle and find all the ways I’d now exacerbate my condition. I need to recognize how certain fulfilling activities will cause flare-ups so that I can now avoid them. I need to identify how certain tendencies got me this far in life but now become liabilities. I need to assess my personality, behaviors, and attitudes and hone in on the pieces that aren’t unhealthy under other circumstances yet now create risks for me. I need to analyze my relationships and determine in partnership with those friends and family how I need to modify them in order for them to remain mutually nurturing and fulfilling.

As I've learned from time on the trail,
it helps to break up arduous efforts into smaller pieces.

That deconstruction is painful and hard. Having slogged through it once before for other reasons, I know what lies ahead. It requires an introspection that most people don’t engage in. It forces you to analyze not just how you’ve lived, but to understand why. It inevitably drags some skeletons out of the closet, because no one lives perfectly, and everyone has some blind spots. It forces you so far beyond your comfort zone that you couldn’t find it with binoculars. It leaves you questioning your perception of yourself, your world, and your place in it.  That dissection and rebuilding also takes time; time that you feel you can’t afford because you’re already chafing at the wasted time it took just to achieve a clear diagnosis. For me, I now look back at a couple of lost years. Then I look ahead to a couple more years to attain a new rhythm to life.  As a 45 year-old smack dab in “middle aged” territory, I’m very conscious that our time here is finite and I loathe wasted days, let alone months or years. But, this is my inescapable reality.

But to not face up to the task at hand is a worse fate. To merely wallow onward substitutes a ore unappealing situation than grinding out this arduous self-appraisal. It saves the mental discomfort and avoids trials and errors. But instead, it does nothing to move me forward. In fact, it adds to the physical pain and mental stress by refusing to cultivate my ability to self-manage and maximize whatever potential I have.

I'm not sure about finding a great reward at the end of this,
but I'll tryto stay positive.

I didn’t ask for a life-altering diagnosis to endure for all my remaining days; I shouldn’t be forced to break down and reassemble my life. Nor do those around me deserve to become collateral damage from my new limitations. Unfortunately, these things are not up for debate. The only choice is where I go from here. So I will doggedly labor through that deconstruction, focusing on one brick at a time in the foundation of that new life, and believe that better days lie ahead.

One step at a time,

Jay Bell, AKA Rock Hopper