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Why I Won't Apologize for Grieving My Second Chronic Illness

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I’ve done the grief cycle at least twice before during my 13 years with myalgic encephalomyelitis (ME). I’ve even looped the loop on certain parts, flittering back and forth from acceptance to anger when a relapse hits. But six months ago I hit a boulder, a stumbling block that shook me to the core and now I don’t know where I am anymore, because how do you step on a second rollercoaster when you’re struggling to stay on the first?

Six months ago I received a second diagnosis; I now have fibromyalgia as well as ME.

I knew at the beginning of last year that something was wrong, not quite right with my body. Of course everyone put it down to my M, a bad patch. But after a 13-year war between the ME and my body, I was stubbornly sure that this wasn’t a bad patch, a blip or a relapse. There were so many people I could have said “I told you so” to, but there’s no delight in being right when all your hope is slowly breaking.

My fibro diagnosis wasn’t even a complete surprise, but when it came it still hurt.

It rocked the very ground I was familiar with, stole away everything I thought I’d known about my body. Turned my positive outlook upside down. Left me questioning my own identity.

I’ve done all the things I can think of to help me in this new journey of mine. I’ve joined many a forum, a Facebook group, subscribed to a magazine, and patiently awaited a pain clinic referral.

But this isn’t just ME now. There’s a new kid on the block and while 13 years down the ME line I thought I knew what I was doing, now I don’t.

I naively always thought ME and fibro aren’t much different, but my fibro pain and exhaustion is something else, which coupled with my ME makes it hard to move, to battle on, to fight the good fight!

The thing I’ve most struggled with is that people around me, people who know about my ME, don’t seem to realize anything’s changed, and that I find frustrating. I don’t want sympathy, I don’t expect people to understand if they haven’t been there themselves, but I would like some empathy, some appreciation that something has happened, that something has changed for me and how I feel.

I understand it may seem contradictory because while I’ve always been adamant that as someone with ME I wanted to still be seen as Elle and that hasn’t changed, I need some time to grieve the appearance of this latest enemy I have to fight.

What I’m dealing with now on a daily basis has changed. My pain levels are all haywire, my self-confidence has taken a bashing, hope and positivity are fragmented, not irreparably broken, but taking time to glue back together, my energy levels are like a yo-yo, and my coping techniques to get through each day are being refined.

So please don’t judge me for not being there 100 percent, for not staying positive, for not giving my all right now. For being more grumpy and more sad, more likely to complain, because it doesn’t matter what number diagnosis this is, I still need time to grieve, mend, heal, find myself again, and get my fight back up and running.

Because I am still Elle. Elle who has good days, and bad days. Days when I just want to cry with frustration and pain, but I am still Elle. I’m a 20-something, animal lover, a big sister, a volunteer, a Christian, a recovering cake/chocoholic with a growing interest in genealogy among many other things.

And neither of these two illnesses are going to define me.

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Thinkstock photo by robertiez

Originally published: April 16, 2017
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