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What I Want People to Understand About Myalgic Encephalomyelitis

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It feels like many people are so wrapped up in their own lives that they don’t see the issues that surround them. In my case, chronic illness and mental illness. Last month was myalgic encephalomyelitis (ME) awareness week, so I am going to focus on this illness. I have come to realize that it doesn’t matter who you surround yourself with, whether it be a best friend, or even a close family member, if they haven’t felt it, they won’t understand it –and often, they won’t even try to understand it.

I am writing this at a time of need, with my left hand, as my right one is stuck in a smelly cast. This time of need has occurred due to people making (what they think is funny) comments about my health. If you live everyday feeling misunderstood because of illness, then you will know how much this causes deep heartache. If you think this paragraph sounds touchy, or as we now say “like a snowflake” has written it, then I am afraid you are one of the said oblivious in the title of this letter – and I would like you to try and truly imagine what I describe in the next few paragraphs…

Imagine waking up in the morning. You got home at 5 a.m., you have work at 8 a.m., and you have the most horrific hangover – the kind where you can’t even roll over because you will be sick. You are lying there wondering how you are possibly going to make it through the day without collapsing, because you drank so much that you have vertigo. After lying in bed worrying about what your boss is going to say when you can’t stop falling asleep at your desk later, and hitting the snooze button every five minutes, you finally manage to drag yourself to an upright position and put your feet on the floor. At this point you start to notice sharp pains all over your body, and you have a dry throat, so you go downstairs to get a glass of water. When you get to the kitchen, you have forgotten what you went there for, so you go back upstairs and attempt to get ready. You arrive at work, and people keep commenting on how tired you look, but nobody asks if you’re OK. Your hangover blues kick in and this upsets you much more than it should, but the alcohol has heightened your senses, so there isn’t much you can do about the emotional pain you may feel today.

Lunch time hits and you’re more exhausted than ever, despite having at least three coffees, which instead of waking you up, have caused heart palpitations and the shakes. You go to the toilet to let yourself endure a panic attack. You have no idea why you feel so bad, and genuinely think you are going to die, you have nobody to talk to about this, especially not at work.

That time has come, the one you were dreading this morning. Your body feels heavy and you can barely keep your eyes open. You pull yourself through until 5 o’clock and get straight in to bed when you get home. You can’t even bring yourself to change, and put your phone on “do not disturb,” because people keep texting and calling you, complaining because you don’t want to go the pub tonight.

You wake up the next day feeling refreshed, you make your breakfast, feed the cat (which you forgot to do yesterday, oops!), and text your mates asking what time you are meeting after work…Right?


Believe it or not, for many with ME, this would be classed as a good day. But, instead of being caused by a hangover, it was caused by going the gym the night before, or even just going out for coffee. Everyday tasks do not come easy to many people with this condition. It is real, and it is physical. It is not just a condition of being tired, it is not the condition of being lazy. ME affects the neurological system, usually impacting the immune system and nervous system. It is impossible to know how you are going to feel from one day to the next, making plans is virtually impossible, and the worst part you lose friends through lack of understanding.

It is incredibly isolating being in intense pain, not having the cognitive abilities of most people, and spending what feels like your whole life in bed. If you know someone with ME, please stop making them feel bad because you can’t see their symptoms. Please stop comparing your tiredness to their intense fatigue, stop telling them to “man up.” Instead, offer to help them, invite them to your house to watch a movie, or you go to theirs.

It is important to remember that ME effects everybody differently, never assume that one person doesn’t have the condition or doesn’t struggle because you once met somebody who you deemed to be worse off. ME awareness day was on May 12th, 2018. While that took place last month, please take this opportunity to learn more, and help those around you. If like me, you have the condition, and feel alone. You aren’t, and I will always be proud of you, along with the other 17 million of us worldwide.

Getty Image by Nadezhda1906

Originally published: June 25, 2018
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