6 Feelings I Have About Living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
One neurologist called me a “woman of mystery”, another one basically called me a faker
… the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions. – Dr William Reeves, CDC Chief of Viral Diseases Branch, CDC Press Conference, 2006
For the last quarter century, I’ve lived with on-and-off bouts of extraordinary fatigue. There was a period in 2008–2009 where it met the criteria for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). That period ended when we moved from a moldy rental and then the next year found me going gluten free after my celiac diagnosis. Between moving out of the moldering house and then going gluten free, I feel so much better I thought I’d been nearly cured. I now understand that I was merely in remission.
Things begin rebuilding into full blown myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) again in 2014 after being sexually assaulted and developing PTSD from that horrific attack. I was evaluated for everything under the sun including MS and Lyme disease. At the time my levels of faituge were not nearly as profound and distressing to me as symptoms such as foot drop and my right hand randomly dropping items. I was relieved to be told I didn’t have MS or Lyme, but left feeling utterly alone and abandoned when one neurologist told me “You’re not disabled, you’ve just got fibromyaliga. You can get rid of that cane.” and another one told me that he didn’t know what other tests to run and then called me a “woman of mystery.”
I’ve never been a mystery fan.
I would much preferred to have been given an accurate diagnosis that included the vitally important information that exercise, especially ‘too much’ would only make my condition worse.
Eight years after the first neurologist appointments and six years after the last one, I am now disabled by it.
I’ve got a lot of feelings about the level things have reached. Here are some of them:
I’m sad, grieving the me that worked at a bookstore 10 years ago, spending my time traversing those aisles for hours, helping people find just exactly what they were searching for. Like the time this guy came in and, with joy splattered across his face, told me that his daughter was about to graduate from college and he was looking for a book about strong women. Specifically one that had a full page woman on one page with a one page bio on the facing page and, ya know what, I found him a book just like that and had the pleasure of witnessing his face light up in joy over the thought of gifting that to the daughter he was so proud of.
I’m mad as hell, at the doctor who told me that I just needed to exercise more and work on my trauma and I’d be so much improved as to no longer need the disabled parking placard I was asking him to sign for. He signed it for a year, explaining in that condescending way I’ve experienced again and again, that if I’d just engage in graduated exercise I wouldn’t need the placard by the time the year was over. I’m mad as hell that his lack of knowledge and/or insight and/or ability to listen to his patient was not a new experience. I’m mad as hell that it likely won’t be the last time some doctor who can’t be bothered to do their research and to actually listen to what their patient is saying, will dismiss the severity of my symptoms and make things worse (again).
I’m stressed and distressed about my inability to work outside the home at all and my inability to work remotely for more than an unreliable few hours here and there. Everything under the sun keeps going up in price while my husband’s hours continue to get cut a little here in response to the same inflation that has him needing more-not-less hours. To add to this stress and distress, we’ve recently learned that the business has been listed for sale by the owner AND the building it housed is has also been listed for sale. The instability and my inability to take some of the burden off of his shoulders is awful.
I’m scared of what the future may hold for me, for my husband and my children. Will I end up completely bed-bound, utterly dependent on my husband and son to bring me food and help me shower? Will my children lose their mother while they are still young adults working on their own healing after our life with that narcissistic bastard? Will my husband be left a widow with decades left in front of him to spend alone, potentially lost in regret for the things he got wrong in our marriage instead of being able to celebrate all the wonders of this marriage we’re now living in together?
I’m grateful that I’m with the partner I’m not with because the first time I had a major, disabling flair my narcissistic ex made my life an even bigger nightmare than it had already been. I swear he seems to delight in my dependence on him. And you better believe that, even while delighting in my reliance on him, he also bitterly complained about my neediness and made sure to remind me over and over and over again that no one else would love me or want me or be willing to put up with having to support me like he did.
And I’m committed to living the most magical life possible, while respecting my limitations. Life is too short and for me it may well end up being shorter than most folks get, I’m not willing to spend what precious time I have complaining and harping and saying woe is me. No, I’m going to focus on how incredible magical it is that I am able to write this while laying in bed with so many pillows behind to soften my landing, with my service dog curled up at my side and with the bedroom windows cracked open to allow me to listen to the rain falling.
Closing Thoughts
The rain outside my window has stopped and I see some sunlight shining through a break in the clouds and this seems like a pretty good metafor about living with :
Sometimes it’ll be a light and lovely rain.
Sometimes it’ll be a downpour, washing away your joy.
And sometimes the rain will stop and the sun will come out for a while.
Thank you for reading.
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