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What Acceptance Looks Like After My Chronic Fatigue Syndrome Relapsed

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Years ago, I was able to confidently see the positive sides of how myalgic encephalomyelitis (ME) had affected my adolescence and made me the person I’d become. Yes, it had been tough, isolating and upsetting, but being seemingly on the other side of it, I could see how the condition had highlighted and drawn out beneficial qualities I never knew I had. This realization came at a point when I was feeling much better – ME, also known as chronic fatigue syndrome (CFS), felt like it was in my past. It felt like something I’d lived through and survived, and I was now OK.

But that didn’t last. Now in my 20s, I’m dealing with a relapse that’s lasted around two years and I struggle daily to accept it. I feel it more keenly, perhaps, because I finally felt that I was living life the way I wanted, only to have it taken away from me again. I’ve gone through a rollercoaster of emotions from denial to resentment, struggling with feelings that my body has let me down and continues to do so. That it has stopped me becoming the person I feel I should be and living the life I want to live. Sometimes I’m angry and sad; I grieve for who I was before this and the person I thought I could be today.

I know that I need to accept my life how it is. I don’t have the spare energy to be getting angry about how I think I should be living and frustrated that I can’t make it a reality. I know that accepting this condition and the effect it has, and will continue to have on my life, will make me happier and more at peace. I know this, but I feel like I can’t.

Somewhere along the line I’ve managed to equate acceptance with giving in and I don’t want to give in. I don’t want to be at the mercy of my body and this condition telling me what I can and can’t do. I don’t want to settle for doing less than I want and steadily pacing my activity each day. I want choices – all of them – not just the ones my condition limits me to. For me, acceptance sometimes feels like saying, “I’m done fighting.”

It’s a long road. I’ve come to recognize that acceptance for me isn’t simply black and white – I can’t wholly accept my condition, nor can I deny it. Instead, I fluctuate and shift between the two. Some days I accept where I am and where I’ve been. Others, I mourn for possibilities lost, passed up or not offered in the first place. Some days I’m OK with changing plans because I’m too unwell, other times I feel sad that my illness has, yet again, forced me to stop doing something I’d enjoy and guilty for letting people down.

I’ve managed – finally – to let go of the hope I had when I was first diagnosed at 13-years-old that one day I’ll wake up and simply feel well again. Today, I’m more realistic and hope takes a different shape: it’s a hope that I’ll be able to live the life I want to whilst having ME/CFS. It’s acknowledging that my “normal” is different to what I thought it would be. It’s hoping that I can still achieve what I want to, even if I have to go about it in a different way. I am able to hope these things, but I’m still working on fully believing in them.

Perhaps this is a kind of acceptance after all – not a wholehearted embrace of how I feel and what my life looks like, but an acknowledgement that ME is a part of my reality. I don’t have to be happy about it, but I can try to be at peace with it.

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Gettyimage by: domoyega

Originally published: December 5, 2017
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