Share a story – Katie

I’ve had M.E. for 5 years now and when asked by Smile for M.E. to write this I had no idea what to say because there is so much to say about ME and Severe/Very Severe ME but never enough words for it all. Never powerful enough words. There’s the fight for a diagnosis, the gaslighting and abuse from medical professionals, the debilitating symptoms and all it takes. And then acceptance and the community.

M.E. has so many sides: severity, fluctuations, symptoms, changes, management, people and community. The community is one of the rare positives. 5 years ago I got ill one day (shingles) and never got better. And over those 5 years so much has happened.

I’m someone who has spent the majority of their illness journey, and consistently the last two years, getting worse. I’ve bounced around the severities a bit, started housebound, then Mild for a short time, housebound again, Moderate and then Severe and 24/7 bed bound and I now fulfil the NICE Very Severe ME category. Deteriorations mostly due to GET and inappropriate treatment, plus big ones like colds, covid, vaccines and the accident I had.

It’s taken my schooling, GCSEs, A levels, teenage years, friendships, parties, sports, hobbies, family connections and experiences, good experiences, joy and it’s even taken types of bad experiences away from me, but ones that would have taught me things as well as ones I was glad to escape, if only it could have been in a different way.

It’s taken away my ability to walk, sit upright, see people, my independence, and my ability to do my own personal cares or have a hug. It’s taken my sense of self and many times the light I had inside me. It’s ripped me to shreds and torn me apart. That’s mentally and physically.

The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. M.E. is a severe illness. 5 years of daily debilitating symptoms including the year I survived school with it. But the last two years have been on another level. I’ve had to face an unbelievable amount and a constant torrent of symptoms, the crushing weight of them, feeling like my head is underwater and I’m drowning, unable to understand or process the words or what’s going on around me. The days of having to fight for every breath. Delirious due to exhaustion. Paralysis, head-splitting migraines, muscle spasms and myoclonic jerks. Pain. Light and noise hurting.

It’s given me pain, suffering, trauma and mental health struggles. Then community, better friends than I had and an appreciation for smaller things.

The last 5 years have been incomprehensible to me let alone to others. It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life has snowballed out of control until I’ve ended near the bottom of the scale (though most definitely not the very bottom). Trapped in this bed and trapped in my own body – fighting to live but my body only imprisons me more.

One thing I can say is that in these 5 years, as my health has been on a mostly downward decline, my acceptance has grown. My community and support have grown. The little moments and getting to do activities feel even more special. Those things don’t take away the rest and I can’t say I’m grateful for the illness, I’m very definitely not and would take it all back to feel healthy. But I am grateful for the community and the understanding it’s given me of the world. Grateful that I’ve grown as a person and found incredible people who I value so much.

It might sound ridiculous to say that my understanding of how to manage the illness has grown when I’ve been getting worse. However it’s in getting worse, this community and finally finding medical professionals that are helpful, that has shown me the truth of this illness and how to manage it.

My journey with ME is unfortunately not over yet, I’m sure there will be many more winds or what feels like an endless road, but it’s nowhere near as long as so many have had. I hope in another 5 years there will be treatment and management. In the meantime, I’m going to do everything I can to try and educate and advocate for better for us.