Share a story – Rebecca

I have M.E., but it does not have me: finding happiness in books.

Rebecca, @LittleMemoirs

I was diagnosed with M.E. when I was 14. My childhood, although happy and filled with so much love, was tainted by constant sickness the older I got. From ENT issues to frequent flu-like symptoms and being prone to bone breaks on the playground, I knew that my body acted different to the other kids. I overcompensated by being clever and quiet, keeping out of trouble to not draw attention to my limitations, becoming the first Head Girl at my Primary School.

But when I started Comprehensive School, things shifted massively. I caught glandular fever, and it knocked me for longer than I’d ever been sick. I could no longer be the limitlessly physically active girl that loved playing netball and riding bikes. I missed weeks of school before returning infrequently, though still feeling unwell, feeling so out of place. Now all eyes were on me. I wish I could say it was just the kids that made me feel excluded, ones that saw my declining health as a bullying target, but the teachers and assistants were far worse. People would be horrified to have heard and seen some of the situations they put me in. There wasn’t just a lack of compassion for a clearly sick child, but a massive chasm where education lacked the fundamental understanding of healthcare. They didn’t see what I was, a poorly child. They saw a “school refuser” and an “inconvenience.” Didn’t they see how much I wanted to be like everyone else? I wanted it more than anything.

I had hoped that schooling failures to protect ill children might get better with time, and that youth with M.E. would be better understood in the future, but I don’t think we are there yet. Knowing more children will be put through the same trials triggers a wounded part of me that has never healed properly, and might never.

After an exclusion of other things that led to a final diagnosis of M.E., something I’d never heard of before, I was being home-schooled and had lost all my friends, minus two that still keep in contact. If you won’t come to school then I can’t see why we should stay friends, one had said. We’d been friends for eleven years. I must have cried for a week. To a teenager, a doctor telling me that I had M.E. felt like a life ending prognosis—but coupled with losing everything that made me who I was, it felt like my life was already over. What was I even trying to hold onto? It was already gone. I knew that the day I was diagnosed with M.E. was the day that old Rebecca ended, and I began. Whether I liked it or not, this was my life now.

Milestones came and went, and I felt like a backseat driver to my own life. I hardly went out, and I spent my days in pain, taking a variety of medication, going to appointments and coping on three hours sleep. In the midst of it, I had started reading more to escape everything that was going wrong in real life. I began collecting a series of Vampire books that allowed me to break free from reality. I’d gotten to book six when I had the idea to start a book blog to share my thoughts, after developing a love of American ones I’d read online. Even if it didn’t get read by anyone else, it could just be mine. Something M.E. couldn’t take. I didn’t understand at the time that the day I posted for the first time would be my lifeline. Looking back, I’m not sure how I would ever have coped for this long without having it.

Would you like to join our book panel? I had read the subject line over and over again. It was a couple of months since I’d started my book blog and an email came through from a website that sold books and shared reviews for readers. They wanted to send me books to review as a virtual panel member, something I could do in my own time from home. My blog had impressed them. I was coming back from a doctors appointment where my medication had been increased due to worsening pain, but that made me smile for the first time in a while. That was only the beginning, my book blog blossoming into something bolder and brighter than I’d ever imagined at sixteen. Every morning brought exhaustion and heavy eye bags, but having books and stories in my life gave me something to look forward to after a night of restlessness. Something that could transport me somewhere else, a place where M.E. didn’t exist and I was just me.

When I celebrated my blog’s ten year anniversary in 2022, I couldn’t help but think back to those early days when I joined the book community, a dwelling that became my happiest of places. I wish I could’ve told younger Rebecca that she’d make friends online that made all those bad memories and losses feel indifferent, and that she would find people just like her, with M.E., who also found solace in books and struggled to find a place in the world outside of sickness. I’m even a part of an M.E. bookish group chat on Twitter/X, somewhere we can share candidly our symptoms and flares alongside book talk.

And whilst I have never recovered from M.E. like I’d always dreamed, I have learned how to dance with it in a way that doesn’t make my head spin. In the “mild-to-moderate” M.E.category, I have days that often feel like I’ve run a marathon. It various day to day, season to season. I describe my defaults as good days, bad days, and indescribable days where there’s no scale to measure the discomfort. I still mourn who I used to be before M.E. entered my life. I’ve learned that’s natural to do. When you’re insomnia-prone, your mind tends to wander at night to those kinds of bargaining places. I wonder who that Rebecca would be. I’d like to think that she was the embodiment of healthy and healed, that she finished school, went to University somewhere like London or Edinburgh and began working in Publishing, or became an author. That’s still my dream, to write a book—and through ups and downs of feeling not good enough and heavy pain days, I’ve been working on it slowly and surely, the characters vividly existing in the chambers of my mind like little coaches, reminding me to keep going, to never stop being creative because of M.E.

I would love to recover. To be “cured” is an ask far bigger than what feels realistic nowadays, but I’m sure everyone with M.E. has the same goal. Every wish on a star, every 11:11. But now here we are, almost fourteen years later and I’m still existing alongside it, no place for it to leave me be. There’s an acceptance I feel, knowing that things might always be this way, but it also comes with a lot of repression and grief. I don’t want to have to accept my fate, the cards I’ve been dealt. Life can be so cruel. But I know that I should not hate myself for something that happened to me. None of us should. I didn’t do this to myself—M.E. did, and M.E. doesn’t care who you are or what you’ve got planned for the future. It’s a robber of joy, but I refuse to let it have the last laugh. If I do, I’ll not get to see the glimmers of happiness that lay in my daily routine outside of the pain. When my Parents buy me daisies every year on my birthday. When the sunlight creates a rainbow through the living room window. When the couple I’ve been rooting for in my romance novel finally get together. When I just think about the existence of cats.

I have M.E., but it does not have me—I wrote that in a diary I had when I was in my late teens. It’s taken a lot from me, from all of us, more than a person should have to lose of themselves, but I refuse to let it take what I made from the mess it created. That’s mine. Yes, I will continue to miss out on things like concerts that aren’t accessible and spontaneous trips to meet friends and bookish events that others rave about, but by now I’m used to that loss, and make up for it in other, gentle ways. To some it’s a broken record, but I will never stop spreading awareness about M.E. to make sure no one feels alone the way I once felt. I will keep letting people see that flowers still bloom in dark places. I will keep joining M.E. research and following the promising science, however hopeless it feels at times. But what I won’t do, what I promised younger Rebecca that I would never do, is let M.E. become my entire life story.

And that’s a promise I’m determined to keep.