Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from people’s lives. People with ME may struggle with their identity through the loss or great change in their careers. Below are stories of individuals who found their careers greatly changed or taken.
We hope that you will join in the conversation on social media. In this conversation on career and identity, we want to remind everyone that your very existence is enough. No one must prove themselves worthy of kindness, care, and basic human rights. We also hope that you will dive into #MEAction in whatever way is safe for your health. Each person that contributes to the movement that is #MEAction is making a difference. Sharing your stories helps shine a light on this terrible illness.
From May 5th to May 12th, the ME community around the world is fighting for justice for people with ME. We are the Millions Missing! Learn more at millionsmissing.org.
Tamara, Australia
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I know I have a lot to offer[/pullquote]I was an enthusiastic, energetic primary school teacher when I first noticed things weren’t quite right! I pushed through for 3 1/2 years before I just couldn’t move any more. I spent 3 months unable to move, sleeping 22 hours a day.
As soon as I could I returned to work, I crashed again. I took more time off, I returned to work part time and crashed over and over again. This was a cycle on and off until I had children and then I really couldn’t handle even a day teaching. I guess I was already using the limited energy I had at home being a mum and there was just nothing spare. I worked on Thursdays and then had to sleep until Monday. I would spend Tues. and Weds. recovering and they cycle would continue. I persisted for many years trying to return to work and finally last year accepted teaching was just too physically demanding for me and retired. It was heart breaking for me to give up not only my career but what I felt was my calling in life. I know I am a good teacher. I know I have a lot to offer, it is such a shame I waste my life in bed not contributing to society. I have had people say to me “you are so lucky you don’t have to work” I reply with “you are so lucky and privileged to be able to work, I wish I could”.
Lori, Tracy, California, USA
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]A shell that struggles through everyday, just trying to find a moment of joy to keep pushing.[/pullquote]
Prior to July, 2018 I had worked since I was 13, and had spent my last 20 years in management. July 2018 I came down with a cough, a cough like no other I had ever had, though I’ve had asthma and many bouts of bronchitis all my life. After three doses of antibiotics and two rounds of steroids my GP said I just needed more time. I said NO, something is terribly wrong. My joints ache, I’m exhausted, I don’t feel right, my brain is foggy, I can barely walk from room to room, my skin is dry and flaky, I cannot tolerate light or noise, a shower is exhausting, I can’t drive, my short term memory is shot something is TERRIBLY WRONG
After two Pulmonologists, a Rheumatoid specialist, and a Neurologist, I was told I had Fibromyalgia. I said no, that doesn’t make any sense. I left my current insurance, started using my husband’s, and went to see his family doctor in town. I was immediately diagnosed with CFS/ME triggered by the virus that attacked my lungs. I then went on to see a new Pulmonologist, who has luckily been able to treat my lungs with an antibody therapy, and they are slowly clearing. However CFS/ME has left me unemployed, unable to drive, and unable to do much of anything. No more live music, I am no longer able to go on a motorcycle ride with my husband, or go for 4 x 4 rides in our jeep, unable to tolerate loud restaurants, and I can no longer travel to watch my granddaughter in her dance competitions. I am unable to do typical chores, unable to cook, unable to take a shower more than once or twice a week. It has taking me from a fully functional, commuting, working, active person, to a homebound 57-year-old virtually overnight. CFS/ME has taken my old energizer bunny self, and left me with a shell of my old self. A shell that struggles through everyday, just trying to find a moment of joy to keep pushing.
Funny Dutch Girl, The Netherlands
It’s hard to work when all I can do is lay down. The disappeared concentration and thinking abilities don’t help either. I hope I’ll be able to work someday.
I’m happy I live in the Netherlands where we have paid sick leave, if you can convince the social securities doctor you’re ill. Which is not an easy feat.
Katarina, Sweden
I lost my job because of my ME.
Liz, England
I was a trainee accountant before I had this illness I worked so hard to get there just to have it stripped away from me. I’ve had this illness for 2 and a half years.
Tiel, The Netherlands
I had a wonderful job with lots of potential but fell ill before I was 30.
Pictured below (from left to right): Katarina, Liz, Tiel
Lorraine, Hileversum, The Netherlands
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I hate the fact I had to give up my independence[/pullquote]
I’ve had to give up work in the past 4 years. I hate the fact I had to give up my independence, as I have always been very independent.
dsavannah, Atlanta, Georgia
I miss being able to create. I miss my career as an artist. Now I can’t hold my camera because it hurts too much. I can’t hold or use a paintbrush or crochet hook because I’ve lost my fine motor skills. And I can’t see well anymore. I miss my career something fierce. I miss being able to help others. It saddens me when I think of all the students whose lives I never got to touch.
Lainey, United Kingdom
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]Living with this condition feels like a full-time job in itself.[/pullquote]
My name is Lainey, and I have lost my career due to ME. I am barely into my 30s and I feel like I am on the scrapheap already. Before this disease began to manifest, I was already heading into a quarter-life crisis: I think the eventual nervous breakdown was the catalyst. I was stuck in a low-paid job I hated, with no light at the end of the tunnel. I thought that I found it difficult to concentrate because I was unhappy. I thought that I struggled to wake up in the morning (and sometimes fell asleep at my desk) because I was jaded and depressed. Something inside me eventually snapped, and I applied to return to University as a mature student. However, I still struggled to wake up in the mornings, nor could I focus on my assignments. Why? This is what I had been looking forward to, after being in a dead-end job for the past few years! When my tutors started to get annoyed with my timekeeping and I found myself struggling to reach deadlines, I knew something wasn’t right. Further education was what I wanted, I just couldn’t understand why I was listless, lethargic and finding it hard to focus.
To cut to the chase, after many medical tests and investigations, I was hit with a diagnosis of ME. I still find it hard to take it in sometimes. Naively, I hoped that it wouldn’t stop me from finding a fulfilling career, but unfortunately there is only so far that determination can get you. As stubborn as I am, I tried to “forget” the diagnosis and applied for an internship with a local business, arranged by my University. I even fully disclosed my condition to these employers, with the hope I could make a career work around my illness. I met some lovely people, but it became apparent that I could not fulfil the hours they needed, or often turned up to work looking and feeling like a walking corpse (or sometimes not able to turn up at all). The stress exacerbated my symptoms and often led to breakdowns or “crashes” in the office. Eventually a difficult conversation was instigated by my employers. I was hurt, but ultimately, they are running a business, not a charity.
I don’t know what each day will bring, and any potential employer in their right minds wants employees they can rely on. ME makes me unreliable, its unpredictable. Living with this condition feels like a full-time job in itself. When people ask the dreaded “so what do you do” I tell them I work from home as a writer, as I am embarrassed and saddened by what this disease has reduced me to. How can I tell a world that already struggles to understand, “no, I don’t work, because I have ME.” I hear my close friends and family talking about their careers, their ambitions…I feel happy and proud for them, but sad at the fact it is highly unlikely that I will be the high-flyer I once dreamed. Sometimes they say, “I wish I could stay in bed like you” and I want to scream back, “NO YOU DON’T!”
They don’t realise that I would give almost anything to feel like I am making a difference; to be an active, useful part of society who is doing something that fulfils me and gives me a purpose. I want to have hope, but instead I just feel like I am a forgotten one of the Millions Missing.
Jeanette, Norway
I miss teaching. I miss making a difference.
Thank you again for sharing your stories. Join the conversation on social media all week. We will fight this fight for all of the #MillionsMissing. For all of you.
1 thought on “Career and Loss for People with ME”
I love that this article begins with a paragraph about, “your very existence is enough. No one must prove themselves worthy of kindness, care, and basic human rights.”
Thank you to everyone who shared their stories.
I can so relate to those who had to point out to other people that we only WISH we could go BACK to work!
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