Living with M.E.: A Silent Struggle for Recognition and Compassion

My life, my entire existence, is dictated by those two small, unassuming letters.

M. E. 

M.E.

ME

me

It is me and I am she.

And she has greedily, ravenously consumed whole years, decades of my life. Passions. Friends. Hope.

She reaches her vice-like grip into your existence, and never lets go.

We’ve been invisible, those of us living like this for so long, existing in the margins.

No-one cared when I lost not just my job, but my entire career trajectory, home, city, friends, family, ability to so much as go outside.

I screamed into the void, begging, pleading, rending garments in the hope someone would cast even the merest morsel of support, but not only did none come, but active persecution followed.

I discovered I had lost my job when they stopped paying me. I called to ask why my stipend hadn’t been paid, and was told “why would it be, you don’t work here any more”.

I spent the next weeks frantically pawing through every item I owned for coppers to piece together enough to get an item of food from the end-of-day reductions from the Co-op across the road.

Yes, that’s a real thing that can really happen. Because as a doctoral candidate, you count neither as student nor as employee, and are therefore afforded no rights. You can spend literal weeks at a time not going home, not sleeping, not so much as brushing your teeth, in order to ensure the big boss men get their accolades on the back of your work…but heaven help you if you think you’ll be treated as a human being.

I wasn’t even important enough to have a desk. Despite running the entire research arm of a doctor and clinical researcher by myself.

Hell, I was dragged INTO A HOSPITAL by this aforementioned “doctor” with RAGING glandular fever, in order to retrieve a document from a few floors above him, as he “couldn’t be bothered”.

Yes, he is still practicing (a consultant now!) - and receiving accolades.

And surprise, surprise, in short order I ended up immobile with disabilities caused largely by the unfathomable stress of having to live and work this way - M.E. (Myalgic Encephalomyelitis) and fibromyalgia, on top of many pre-existing conditions.

But what really gets you is the way those supposedly closest to you also join in the punishments.

The bride who unceremoniously uninvited me from her wedding - and life - in spite of the VAST sums I had spent on the whole ridiculous process, because I had the sheer temerity to be ill and therefore not be able attend the hen party, which, again, I had already paid ridiculously over the odds for.

The many, many people who really took the concept of ghosting to heart and left me reeling.

The doctors who have less than zero interest in doing their jobs, finding it far easier and therefore preferable to simply tell you “there’s nothing they can do”.

Even the supposed “specialists” whom you wait YEARS for the supposed honour of receiving time with, who eject you from the consultation room in under 90 seconds, with the words “there’s nothing I can do” ringing in your ears once again.

It’s fucking grim.

And now there’s some weird push to make it the cause du jour.

But my suffering is NOT your opportunity to virtue signal. 

The last few years have brought attention to this disability in ways few could have anticipated, but please remember that we are PEOPLE affected by disability, not a collection of symptoms, or an opportunity for an attention-grabbing post.

Staying here when the pain of existence is so strong is fucking hard. Please don’t make it harder for us.

And know that if you’re suffering similarly, I REALLY get it, and can help alleviate some of the physical symptoms, if you feel called to that work - you can trust me as an informed and safe practitioner. Drop me a line if you’d like a wee chat to see if if could be a good option for you - [email protected], or use the contact form.

And please, share your stories if you feel safe, able and ready to. I hear you.