Medical, Social Misunderstanding of Chronic Fatigue & Fibromyalgia

Or, Diagnosis: Epilogue

I listened in horror to my voicemail.  Somehow, it had recorded a conversation between my father and a friend of his. The incisions on my tummy had only just become painless in September 2005. But no longer. Apparently, my body couldn’t take listening to less than flattering words from my own parent.

Later his friend tried to justify my dad’s behavior. “Devin” had expressed anger because my father was nowhere to be found while his daughter prepared for, then underwent, major surgery. Father was only reacting to that anger. “At any point in all this, did he ask how I am?” I inquired. Silence.

When Lady Diana Spencer was engaged to marry Prince Charles, some in England wondered whether she was good enough for him. Her father responded that the real question was whether Prince Charles was good enough for his daughter. I already knew this was not the nature of my patriarch but we had reached a shocking new low. Each assumption I made – I know he did this but he wouldn’t do that – always got broken. Now I was faced with incontrovertible evidence that the father I had adored as a child was gone. (Did he ever exist?) It was time for a tough decision. What’s more important to me? My health, or my father?

I didn’t realize this was to be only the first in a series of wrenching decisions over the next few years. As I pursued diagnosis of whatever was disabling me, dealing with unhelpful doctors was heartbreaking. But I understood that these were people who didn’t know me very well. Because if they did, they would know that when I say something is difficult, it really is. I don’t give up easily.

So, I was gutted when “Emerson” spat words at me in the middle of a movie theater. “Are you still eating lamb? It’s a yes or no question!”

I took a deep breath. My chelation therapy protocol had required 3oz organic meat a couple times a week. Supposedly, some surprised researchers discovered that this puts the liver in a state where it removes heavy metals from the body more efficiently. Emerson and I had had a good laugh at the thought of me eating meat. I would have thought that my willingness to try this approach signaled my commitment to recovery. I wasn’t interested in how things ought to be. I was focused on actual results. And I couldn’t believe I’d spent all weekend resting in order to spend time with Emerson.

Without training, it’s easy to misunderstand Chronic Fatigue Syndrome/Fibromyalgia, especially the CFS part. You would need to observe a patient for six months and rule out other possible sources of fatigue before considering CFS. That’s hard to do in the few minutes one gets to spend with a doctor. Even after proper diagnosis, CFS/FMS can’t usually be treated with a simple prescription or within the prevailing medical traditions. If the medical system can’t accommodate it, then they certainly won’t enlighten society about it. We are well educated about what to expect from cancer and alzheimer’s, but Chronic Fatigue confounds our usual cues for sensing serious illness in others.

It’s taken me all of the last five years to learn how to operate with my uncomfortable, fatigued body. And whatever I don’t understand, people around me can’t support. On my birthday in 2008, Christopher called and arranged to take me out to lunch while Roisin planned an evening with her and Lisbeth. Both events were to take place the next day. Feeling good and forgetting that it was because I’d spent many days just resting, I excitedly accepted all invitations. I ended up having to cancel lunch at the last minute. Having experienced a small revival by evening, I dragged myself out and smiled despite the pain and heaviness in my body. I’ll never forget that beautiful evening but I’m never doing that again. There was was hell to pay over the next many days for pushing myself that hard, but nobody who saw me with Roisin and Lisbeth could have guessed.

On that movie outing with Emerson, I had to say something. “I would appreciate it if you wouldn’t talk to me in that hurtful way ever again,” I heard myself say in a surprisingly calm but firm voice. Unfortunately, Emerson’s reaction was to attack me further which in turn led to tough decision number… Actually, I’ve lost count.

Today I’m better enough to write a blog post each week as long as I never use the phone (almost) and get help with various things like food and paperwork. I couldn’t do this much a year ago. It seems to me that personal crises often reconfigure the landscape of relationships in one’s life and I increasingly see Chronic Fatigue as an opportunity to know myself, redraw healthy boundaries, and find out who my real friends are. Maybe I can contribute to the societal understanding of Chronic Fatigue & Fibromyalgia. And maybe, just maybe, removing the added stress of medical and social misunderstanding will help CFS/FMS patients get better faster.

I think I’d like to speak about my patient experience at a few medical conferences when this is all over.

8 thoughts on “Medical, Social Misunderstanding of Chronic Fatigue & Fibromyalgia

  1. It is amazing the journey that ill health can send you on.
    Sadly not everything we learn along the way is life affirming, but this can give strength to us to keep trying to improve our situation.

  2. *hugs*

    I know what you mean on the parental front – I found it amazing that after cutting my mother and various ‘friends’ out of my life almost 50% of my ME/CFS symptoms improved.
    ..and I definitely hear you on the last minute cancellations, sadly had to do that far too many times myself over the last 5 years :0(

    The plus side to this illness is only that it helps you to refine your idea of what is really important and to manage your time effectively – we probably only get at best 3 productive hours in a day but those hours are used far more efficiently than most healthy people manage to use 7

      • lol who am i? that’s a question I ask myself frequently *grin*
        so in answer to the rhetorical;
        I’m a geek, a creative, a mum and a little girl. I’m a seeker of knowledge, an ongoing improvement project and sometime blogger- and i’m buggered if I know which of all that trumps the rest.

        ..but if you meant it literally; my name is Vicky Stringer, I’m 34, live in Hatfield, Herts, UK with my wee lass and her dad while I try to finish my computer science degree (tough going with the me/cfs but i’m stubborn) is all good here. ;0p

        • Wow, we’ve got quite a few things in common: geek, creative, little girl, blogger, me/cfs, computer science… I like what you said on your blog about certain good things coming in to your life thanks to CFS (or words to that effect).

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