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Voices of ME - Stories of People Living With ME/CFS

Do you have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, or a related chronic illness? Share your story today to raise awareness and inspire hope within the community. And don’t forget to read the many uplifting stories of people living with chronic, complex diseases around the globe.

Erica’s
ME/CFS Story

“Although I felt like my body was betraying me, I came to realize that my value as a person is not determined by my activity level or the goals I will never achieve. I now find meaning and value in different ways.”

You have undeniable power.

Share your story

Charlotte’s
After years of learning how to pace myself and adjusting to what my body can and can’t manage, I am now at university completing a law degree! I appreciate this wouldn’t be possible for many people with ME/CFS, so I am incredibly grateful to have reached a stage where I am able to pursue this.

Scott
In 2017, I became chronically ill due to chemical exposure in the workplace called hydrazine. At the same time, I moved out of state to start a PhD program at Boston College. All my doctors told me, “You’ll be back to normal in 2 weeks; it’s just anxiety,” so I kept pushing myself, working 100-hour weeks for an entire year before I burned myself out and had to drop out of school.

Sean
I had dreams of driving and a fascination with cars. The shattering reality of these illnesses never fails to remind me that I am very far off from being able to pursue the dream of something as simple as being able to drive my car.

John
I was a career firefighter/paramedic who was exposed to a person with COVID at work in December 2020 before vaccines were available… I soon found that I had problems getting through my 48-hour shifts, with headaches, heart palpitations, fatigue, and concentration problems.

Meghan
I haven’t felt normal in almost ten years. I can barely hold down a 15-hour-a-week job working from home. Some days, showering and doing the dishes are all I can manage. I don’t feel physically weak, but my mental fatigue is completely debilitating.

Jody
In terms of daily life, I can only leave the house for a few hours in the mornings. I can’t go out for dinner or travel overnight. And I have to choose activities – like a wedding or spending time with my grandkids – knowing that I’ll pay by being in bed with exacerbated symptoms for days.

Leah
I’m privileged to be less severely impacted by ME/CFS than most, but this disease has still altered my life tremendously. Once a long-distance runner, I can no longer exercise at all. Even a short walk through the neighborhood with my dog can leave me in bed for days. I cannot work full time and have been unable to move out of my family home.

Kim Eggers
We go to sleep each night, to wake up the next day, to push what feels like a boulder uphill again… I say that I am strong because I have found constructive ways to cope after years of struggle. Regardless of the challenges that M.E. throws my way daily, I find joy in many things.

April
I developed ME/CFS 13 years ago when I was in peak health and physical conditioning, a multi-sport athlete who had run marathons, boxed competitively, and climbed mountains all over the world… I’m one of the lucky ones, able to work full time and generally high functioning, but all it takes is a single bout of exertion to put me down for weeks or potentially months.

Yas
My artwork is a continuous therapeutic journey. When I work, it’s a meditative practice, a place where I can be free, a safe place to reveal my experiences, feelings, and emotions without judgment and stigmas so often associated with these types of conditions.

Rea’s
Many doctors downplayed my struggles, and when they didn’t find anything wrong, they immediately assumed that it must be “in my head.” And being medically gaslit like this was extremely hurtful and invalidating.

Michelle
There is an abysmal lack of medical research for ME/CFS due to funding. This, in combination with the shameful history of medical malpractice associated with ME/CFS, is an overwhelming reality to encounter when you first experience months and months of debilitating symptoms.

B
B has been struggling with ME/CFS for the last ten years. There was a time when B competed as a long-distance runner, hiked wild trails with friends, and paddled a kayak over white water. He is a musician, a scholar, and a writer. Now his creative mind seems trapped in a swirling mist.

Jean
Between 2012-2015, I was mostly bedbound, and my husband was my caregiver. This was also the first time in my life where I was too sick to write. Thankfully, I improved, and the dark days eventually became brighter.

Christian 

How crazy is that? A disease capable of ending the professional and social life and all leisures of those it afflicts, who leaves them homebound if not bedbound indefinitely, a disease whose most severe forms have been compared to late stage AIDS, – but whose very existence is hardly taught in medicine.

Anna
I wanted to feel a part of something after years of isolation and being on the outskirts of so much of life. I hope this event [Tea Party for ME] can be a lighthearted way to bring the community together to raise a cup and saucer to their inner strength and their tenacity in the face of ME/CFS.

Other links you might be interested in:

What Is ME/CFS?
Computational Research Center for Complex Diseases
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Submit Your Story

Your story has undeniable power. By sharing your experiences, you can inspire hope for all those living with ME/CFS and related, multisystem, chronic, complex diseases (msCCD). Whether you are a patient, caregiver, advocate, or healthcare professional, we invite you to submit your story and be part of our OMF Family. Your story may be featured on our social media accounts (@openmedf), digital newsletter, and website.
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Ideas to start your story
  1. How long have you (or the person you are writing about) been ill? 
  2. What was life like prior to chronic illness? (You can describe your career, hobbies, passions, social life, etc.) 
  3. What does daily life look like now?
  4. What gives you the most hope on your bad days?
  5. What is one thing you wish every person would understand about chronic, complex diseases such as ME/CFS? 

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