The Mighty Logo

How the Past 5 Years With Myalgic Encephalomyelitis Have Changed Me

The most helpful emails in health
Browse our free newsletters

I remember the days when weeks felt like a long time to be ill. Once, before myalgic encephalomyelitis (ME), I got a nasty infection and was ill for about three weeks, but it felt like an eternity. Now the idea of being ill for weeks then recovering doesn’t sound too bad to me.

When I first got sick with ME I swore I’d be better in a few months, then that extended to within a year, and later within two years. When I passed all these milestone with no real improvement, it was crushing. I was so optimistic that I would achieve that two year mark. Now I’ve hit the five year mark and sometimes it truly feels like it will go on forever. I try to hold onto the hope that it won’t, but it is easy to slip into despair from time to time.

The person I was before I got sick now feels like a distant memory. I still get glimpses of her sometimes, like in my rare bursts of energy, but these past five years have definitely changed me significantly. I do remember I used to worry and stress a lot about things that seem silly to me now, such as things at work that seemed so important at the time, but in retrospect didn’t really matter. Being sick, and for so long, has actually forced me to learn to be grateful for the small things, and taught me to value what truly matters.

My story is a sad one, of a young woman cut down in her prime by a devastating illness, subject to disbelief and a lack of understanding from friends, family and doctors. This illness has taken many things from me: my career, my partner (who I’d hoped to marry before I got sick), my hobbies I loved, my fitness, my self-esteem and my independence.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

Still, I do consider myself relatively fortunate. My family have mostly been supportive, it only took me 10 months to be diagnosed (it takes some people years), and I am able to live in my own apartment (with a lot of support!).

The last five years have not been easy, and I have suffered many painful losses, but I am thankful for the lessons I’ve learned. I do, however, feel like I’ve learned enough now! I’m ready for this to be over so I can live a healthy, active life again. Unfortunately there is no miracle cure, so I just have to be patient and take care of myself as best I can, while maintaining hope for a better future.

Photo by Amadeo Valar on Unsplash

Originally published: January 6, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home