A Reintroduction to Me and My M.E
Hello pals. Since there are some new faces here, I wanted to do a little reintroduction to me, but mostly to my M.E.
So here’s a few things to know about me: I’m Lorna, I’m 34 years old. I live in North West England with my husband and my two cats. I love board games, pizza, peanut butter and true crime documentaries. Sometimes I look like this:
... but most of the time I look like this:
That’s because for around 7 years now (4 years diagnosed) I have been living with M.E (Myalgic Encephalomyelitis). I also have endometriosis, fibromyalgia, hemiplegic migraines and POTS (Postural Orthostatic Tachycardia Syndrome).
Today though, I just want to focus on M.E for a minute. For those who may not know what M.E is, here are some infographics that explain the symptoms:
I always try to be as honest and clear in how I represent my illness because it’s one that is still highly stigmatised and disbelieved. I know that many people will see a photo of me smiling, my hair and make up done, and presume I can’t possibly be as sick as I claim to be. Which is why I always try to share all sides of this illness as honestly and openly as I can. Warts and all.
Getting sick with M.E meant that I had to give up my career as a teacher and my life in Italy. I went from teaching, running, hiking, cycling and travelling to being housebound about 80% of the time, unable to work and needing assistance with day to day tasks such as bathing and cooking. My M.E symptoms fluctuate and some days I might sit at the more severe end of the spectrum, where I become bed-bound and unable to tolerate light or sound. However, these relapses are usually temporary and, at my baseline, I can at least walk around my house, do a bit of writing and advocacy work online and play with my cats. I can also occasionally leave my house in my wheelchair to socialise for short periods.
Something I’m very conscious of is that the faces and stories that dominate the online spaces are those of people with more mild or moderate forms of M.E. People who can still, on some level, “function” (in line with the capitalist ideas of productivity). To be clear, I believe that to call any form of this illness “mild” is inaccurate and does an injustice to the suffering and struggles of those living with it.
In raising this issue, I am absolutely not aiming to discredit the work that these brilliant people do - their struggles are valid and their work is important. But ultimately, mild or even moderate sufferers like myself can not and should not be held up as sole representatives of an entire patient group. To do so gives a false impression to the non-sick/disabled public on what this disease is, and how it affects people in its most severe form.
So today I wanted to talk a little about Severe and Very Severe M.E, and what that looks like. I’m including a graphic to help give a clearer picture of hot the disease affects people at this more severe end of the spectrum:
Most people with Severe or Very Severe M.E are entirely bed-bound and unable to walk. Most require constant care, many are unable to eat or digest solid food. Most are unable to tolerate light or sound, meaning they have to live their lives in the dark, shut off from all stimulation. Even the smallest exertion can have a severe effect on their health, often causing tremors, seizures and/or paralysis. They are some of the sickest people I know, yet they are amongst the most ignored and maligned. People have died of it. Sophia Mirza, Merryn Crofts, Jennifer Chittick. Many more have died either from related complications or by suicide, because life became unbearable for them. These people live their lives in darkness and silence, and most doctors either don’t know how to help or don’t care to; assuming symptoms are psychological or self-inflicted in some way.
Because of the nature of this disease, this patient group are unable to advocate for themselves and that’s why I feel that those of us who suffer less severely have a responsibility to speak up for them and to accurately represent what this disease can do.
Over on my Instagram page I’ve tagged a few people whose M.E is (to my knowledge) severe, or at least more severe than mine, and who write or post about their illness. I’m sure I’ve missed lots of brilliant people, for I am but one brain fogged girl, so I would love for any severe sufferers who may be following me to share their experiences, if you’re able, or tag accounts you think we should be amplifying.
I’m also looking for someone with Severe M.E to do a guest post on my blog. I appreciate that writing may be inaccessible for many of you due to brain fog and other symptoms, but if you’re able to maybe record it as voice notes I could transcribe them for you. Please get in touch if this is something you’d be interested in.
Overall, I just want those of you following me to know that my experience is not representative of the entire M.E patient group. M.E is a spectrum disease, and even in my moderate situation on the spectrum my life has been turned upside down and forever changed by this disease. I have lost so much and my day to day life is difficult and painful. That’s not to say there also isn’t joy in my days, but try to consider that if this is what a “moderate” form of this disease can do - imagine what life is like for Severe and Very Severe patients.
Please take this disease seriously, it is so much more than it appears and patients deserve so much better than to be ignored, neglected and maligned by doctors and loved ones.
I’ve included some resources for people to expand their understanding of M.E if they wish. Please feel free to suggest more resources in the comments or message me directly with links.
As always, thinking of Severe sufferers and holding space for you in my heart. Those of us who are able will keep advocating and fighting for a better future for all of us.