How I explain a part of m.e

I get asked on a regular basis why I’m restricted in many ways a healthy person would consider ‘normal’, and like always the words ‘I’m chronically ill’ seem to spill out my mouth without a second thought. It’s become a common phrase in my English vocabulary, natural.

Not so often but often enough, I’m asked by fellow warriors how I go about explaining my conditions to someone who hasn’t even heard of anything but cancer.

Both of these questions always seem to lead onto more questions, out of curiosity or genuine concern. However, more than likely they’re just being nosey. So how do I explain my condition/s?

M.E otherwise known as Myalgic Encephalomyelitis destroyed what I knew and replaced it with a life I have had to work hard to have. I don’t understand the condition myself, so how can I possibly go about explaining it to someone else and expecting them to understand? Whether they understand or not at the end of the day doesn’t matter a great deal, they probably only asked for their own self interest anyway. It’s more than understanding to me, it’s accepting and supporting.

So the question I get asked the most: ‘What’s wrong with you’ or ‘What’s that, what’s M.E?’

When asked this question, a different answer seems to crawl from my brain in the form of words almost every time. Why? Because I’m constantly trying to find the best way to explain such a huge part of my life. I used to be so scared to tell or explain myself, why I was in a wheelchair but could walk a few steps and stand up. It was embarrassing being stared down at like you’re some form of scum using a wheelchair you don’t need. Wrong. I did need it, more than you could understand.

This is how I’d like to explain it:

M.E is a chronic illness with no known cure or cause.

I’ve just ran a 30 mile marathon,  I haven’t slept for the last 5 days and I now have weights tied to each of my limbs forever weighing me down. I haven’t eaten in 2 days, my backs been stamped on multiple times and I’ve has a constant migraine for the past 3 days. On top of all that, I’ve been dropped in the middle of the ocean and I have now been paddling to keep myself afloat, my head just above the water, since forever.

None of that is true but, it’s exactly what it feels like.

I have to deal with that everyday, no break, no pause button. All that and I’m still expected to come out smiling.

How I actual explain it:

I get really bad pain throughout different areas, and over whelming fatigue that riddles my body. No amount of rest or sleep will make me feel any better.

“No, I can’t walk very far.”

“Yes? Yes, that’s why I can’t come to college all the time.”

“Em, no. There’s no cure.”

“No, exercise and diet will not help.”

In reality, I don’t spill my feelings and pain out, not like I wish I could. I quickly learnt that no body really cares and if they do, which still shocks me down to the core, I’m then given an hour long speech on how their friend had the same and they cured it with exercise and a healthy diet.

Anyway, I was interested in how people in my family work around the whole explaining the wonderful and mysterious impending doom that M.E just happens to be. I asked my little brother, who isn’t really that little at the moment, how he explained my illness. His reply was:

“I told my teacher you had M.E and when she asked what that was, I said it stood for Myaldhfhfj Ejfkhffdhhtkf -tis. I told her it meant you were in pain, it wasn’t very common and you were tired all the time.”

If that isn’t one of the best explanations you’ve ever come across, you’re doing life wrong.

I love you Lew.

I asked my mum earlier when she was drinking her well stirred, still hot cup of brew parked on the sofa. She said she’d given up explaining and now told people that it’s best to look it up on the M.E association website. A good answer indeed.

Truly, I have discovered no easy way of explaining my illness. The easiest way to understand it is by spending time with me, being there on my bad days and good days. Comparing the two.

I suppose M.E doesn’t deserve an easy explanation, after all an easy explanation is not best suited for a complicated illness. Finding ease within explaining the condition could potentially be insulting the jungle of madness which is M.E, and those who battle it every single day.

Maybe learning how to explain something like M.E is something I’ll figure out while learning to dance in the rain.





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