Mystery Unfolding

It's interesting to consider that today is ME/CFS Awareness today, as it was a year ago--almost to the day--that I reached my breaking point in this health journey. 

After four years of increasing symptoms, I had not yet been diagnosed. I was recovering from a 3-month-long GI flare that had caused a lot of pain, fatigue, and left me intolerant to even more foods than I had been previously. More often than not, I was headache-y; brain-foggy; nauseated, bloated, and crampy; I was itchy; I was in pain; and I was oh, so tired.

My mental health was not faring much better at that point. I'd been screened and tested for all the things. But having a bunch of tests come back "normal" didn't fill me with relief--I felt anything but 'normal'. Various professionals tried to chalk up some of my symptoms to stress. Of course I was stressed! I was trying to live a life that felt very uncertain, in a body that felt like it was retaliating against me. Sometimes I just wanted to scream, NO! Pay attention! Something is wrong inside me!

But if doctors didn't know what it was, how could they take care of me? How could I fully take care of myself? Was I doing things to make my health worse without knowing it? Was this something life-long, or temporary? Would the day's symptoms interfere with my activities or just simmer in the background? Should I be taking time off work? How would I even advocate for that with a mystery diagnosis? What if it really is all in my head? What if I can't afford this health issue?

I felt like I was being consumed by this thing I didn't even have a name for. 

I had attended a webinar for work a few weeks prior, which included some discussion around mental health. They shared something called the Stress Continuum, shown below.

I was already familiar with the "surviving and thriving" dichotomy. I knew I'd spent much of the last several years 'surviving' (pandemic notwithstanding). And I knew I was feeling particularly rough at that point in time. But this was the first I'd seen that what I was experiencing was not just 'rough' surviving, but that I was camped out in Struggle.

Something hit different seeing everything I'd been experiencing for several months listed so straightforward in the yellow column. "I really can't keep this up" I whispered to myself.

I had a friend offer some wisdom and empathy, and when I limped into my scheduled therapy appointment two days later, it didn't take much of her own wisdom and empathy for me to unravel.

This was rock bottom.

Now; you know how some of the story has progressed. It's amazing the relief and insight a diagnosis can bring. It provides the ability to access and implement relevant treatment strategies; find a community of people with shared experiences to learn and grow with; and interestingly, I've received less of the well-meaning, but often useless, "have you tried...?" comments.

I'm focusing on this aspect of my health journey today, because I think as much as we need to be aware of the disorder itself--to find better prevention, treatment, and recovery strategies--it's important to be aware of the individual's struggle leading up to this particular diagnosis. 

@trishagreenhalgh

ME/CFS is not the only medical condition out there that is tricky to diagnose. But I would argue it's one of the more maleficent conditions, in that there are no clear tests for it (i.e. you won't find lesions or antibodies), and doctors receive very little training on the condition. Indeed, it never crossed the minds of my GP or the 6 specialists I'd bounced around to (or the myriad of integrative health professionals I work with on a regular basis). There are some who still hold onto the stigma from the 80's that it's not a "real" condition, or that it's psychosomatic at best. However, the CDC recognizes it as a neurological disorder, and while there are no specific tests to diagnose ME/CFS, there are patterns and indicators that show up in those with that diagnosis significantly more than other conditions or the general public (the PEM and the mitochondrial dysfunction, for starters).

In many ways, I am fortunate. My condition was 'caught' early. My protective factors, self-advocacy, and various forms of privilege are likely what kept me from moving into Crisis on the continuum.*

Others are not so fortunate.

• There are some who go much longer without a diagnosis than my four years.
• There are those with much more severe degrees of ME/CFS who are consumed by depression or anxiety (or both).
• There are many for whom it's not safe, affordable, or otherwise possible to keep coming back to their doctor and demanding the next option for answers.
• There are some who are never taken seriously by any doctor.

My understanding is that the tides may slowly be turning, thanks to Long Covid. There is increasing evidence that Long Covid is ME/CFS. Approximately 80% of people with ME/CFS develop the condition after a viral infection. Many with Long Covid meet the criteria for an ME/CFS diagnosis; it's likely that Long Covid just happens to be ME/CFS where the specific virus is known. And because of the nature of Covid, the medical field is taking Long Covid seriously,** which means hopefully those with non-Covid-related ME/CFS will start to be taken more seriously too.

Until then, I guess we continue our efforts to make the invisible visible, to get the medical attention we deserve, and in a timely fashion, and to advocate for better.

I do hope that you who are reading these posts are internalizing the knowledge and stories I am sharing. And I hope you will be an ally to those with chronic conditions--particularly the nebulous ones like ME/CFS, fibromyalgia, Long Covid, MCAS, etc. In the same way that marginalized groups of people find themselves having to do the work of educating the privileged when they shouldn't have to, the same often holds true for those with chronic illness. Certainly because of my value of learning, I choose to do this to a certain extent. However, I get tired easily, and there is strength in numbers.

How could you help someone around you who might be Struggling today?

*Thought I dipped my toe into crisis when I contracted Covid. Covid made my ME/CFS symptoms ten times worse, and hit when I was still trying to climb out of that rock bottom place. While I did not consider hurting myself, I could start to understand why those who live with more severe ME/CFS sink into deep depression, or consider ending their life.

**Though, given how blasé the world has become about the short and long-term effects of Covid, I still sometimes wonder if they're taking it seriously enough.