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I'm Grieving the Life Fibromyalgia Took From Me

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When we think of grief, we tend to think of it in the terms of death – the ultimate finality, and loss that a person can face. Losing someone permanently, and needing time to mourn and grieve that loss. But, grief is a funny thing. You see, I’ve learned that death is not the only loss a person can face in their lifetime. And for some people, there are other kinds of losses to grieve that are also painful.

It’s difficult now to look back and see a time before. Before I was sick, before I was weak, and tired. Before my life was just one giant, never ending doctor’s appointment. But the thing is I was a person before this illness crept in. I had dreams, and hopes. I had plans, intentions, goals. It feels like a different lifetime ago, and there’s a reason for that: it was.

It took me a long time to come to terms with the fact that the only good option, the only way healthy way, the only way to come out of this on the other side with my sanity intact, was to grieve. Grieve for the pieces of me that I had lost. Grieve for the dreams left unfulfilled. Grieve for the person I could’ve been, and let go of the used-to-be’s.

I used to be an actress, and a singer. I used to love being on stage, in the spotlight, performing anything and everything.

I used to be the person everyone came to in a crisis. Be it as a counsellor, a mother-hen, a friend, an army major to kick them up the butt. I used to be the first port of call in a storm, ready to fix the problem.

I used to be a carer. I used to love my job, back before the symptoms started surfacing.

And then there are the could-have-beens…I could’ve been a midwife, it was the first job I remember ever truly wanting to do. I could’ve been a photo-journalist. I love writing, and photography is still my safe haven. I could’ve built something more for myself than what I have. I am grateful for the life I have, I know there are those less fortunate. But this is not the life I pictured.

But these are the thoughts that will haunt you at night, and so as I sat here one day, hitting replay on the same old record, I realized I was stuck in the first stage of grief: denial. I asked myself, did I want to sit here, for another year, or three, or 10, listening to the same track on repeat? Or did I want to put on a whole new

Stage two was easy, I was full of anger. Chronic illness isn’t a gift I have been given. It is a curse, a poison that killed parts of me, while leaving the others to survive – just, so you bet I am angry about that. I could scream, and throw things, and just plain fall to pieces in rage.

Stage three wasn’t so easy to transition through. Bargaining with an illness that has taken so much of you seems counterproductive. But in the end you find yourself hoping, wishing, praying, and yes, bargaining, that if they were to just give you back this piece or that piece of your life, give you back this ability, or take away that symptom…then you’d happily put up with everything else, even if it meant one of the symptoms had to get worse to balance it out. But the thing is you can’t bargain with the devil.

I think it’s safe to say that stage four had been around from the beginning – even from before I realized I was grieving. Depression wasn’t anything new to me. The thing about being sick is, you’re eventually going to either get better or die. But that isn’t the case with most chronic illnesses. My diagnosis of fibromyalgia was basically a life sentence of pain. I can’t think of many things more depressing than that, can you? But, after a while, you start getting used to what each day brings and what you can do each day. And suddenly it’s glaringly obvious, all of the things you can’t do. All of the things you used to do that are suddenly absent from your life leave gaping holes that can’t really be patched up, and that is depressing. I won’t say those holes are windows to new opportunities, because that’s cliché – and total crap. All you can do is find ways to fill those holes – the time, the brain stimulation, the enjoyment, whatever it is that’s missing – in ways that your body can endure. It’s a slow process. But there will be something. Even if it isn’t what you expected it to be.

The final stage, acceptance, isn’t some big song and dance. It isn’t forgetting about who you were, because we don’t forget about the loved ones we lose once the funeral is over, do we? It’s about finding a balance, finding a way to remember who you used to be, without causing yourself more pain than you’re already in. It’s about saying goodbye to “yester-me,” so you can embrace who you are today, and devote your time and attention onto them.

Chronic illness is a cruel thing, and what we have to remember is it truly does take something from each of us. It’s OK to grieve for that theft and loss.

Photo by Danielle MacInnes on Unsplash

Originally published: August 22, 2018
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