Myalgic Encephalomyelitis: My Hidden Struggle



The Stevens family #GoBlueforME


There’s a reason Myalgic Encephalomyelitis, or M.E., is known as the “hidden illness”, and it’s a reason that comes up in conversation regularly with people I know. You see, when you have other life-changing illnesses or conditions, they tend to have a way of presenting themselves to the outside world. Maybe you wear a headscarf because all your hair has been lost due to invasive treatment. Maybe your arm was amputated because of an accident. Maybe you lost your balance and fell, and are now sporting a black eye. People look at you in these cases, and no explanation is needed. They see pain, they see trauma, they see struggle. But with M.E. it’s a different story. To the outside world, a lot of days I look like an everyday guy. I walk about, I laugh, I joke, and I seem the same as everybody else. But what people don’t see are the days I’m not “myself”. The days it hurts just to bend over and put on socks, needing help. The days I can’t eat, or can’t stop eating, due to my body having a wobble. The times where just a few hours ago I was writing with a clear head, and now I can’t even remember my daughter’s birthday or why I came into a certain room. 


Just Take Medicine!

I hear this a lot. Take painkillers, take your medicine, go to the doctor’s etc. The trouble is, as anybody with this condition will tell you, there is no real medicine. My specialist and local GP both have a “throw this at the wall and see what sticks” attitude towards things, and that’s because they have no idea either. There are things that work for some, but not for others, and even then, those things may work on some days, but not for all. Factor in the side effects of such things and you have an amazing recipe for disaster. Most painkillers cause constipation for example, or make you sleepy. I’ve lost count of the number of times I’ve had talks with my specialist and doctor about “what would I rather be, in pain, or sleepy?” Well, the answer is of course, neither. To be in pain leaves no life to live, and to be so sleepy and drowsy you can’t form a decent sentence is the same. Again, this isn’t the same as breaking a limb, where you take it easy and heal. Taking it easy works wonders for M.E. but works terribly for lifting your mood. You lock yourself away, you do less, and you “live less”. But then on the days you feel good you do more, and surprise surprise, it ends up hurting you more.


Life Worth Living?

And there lies a huge problem for M.E. and dare I say it, a bigger problem than the illness itself. The life you live. M.E. is so invasive, it doesn’t care about you, it will destroy every last part of what makes you “you”. Let me explain. Just over three short years ago, I was as proud as could be. I had a job I loved, teaching and helping smaller children with special needs. I had a wife who adored me and best of all, I had a new baby. I had just learnt how to drive, we had been living in our own house for a few years with a mortgage, the works … The life everybody strives for. And then, one fateful holiday just three months after my daughter was born, I was bitten around 20-30 times by mosquitos. And for the rest of the holiday I was bed ridden. I came home, and I was still unwell. I spent the rest of the summer feeling awful, but returned to work. After just a couple of weeks in work, I collapsed and had emergency services out. And so began my long, hard struggle of finding the support I needed. But my problems didn’t stop there. Three months later, just after Christmas, I had to leave my job due to taking too much time off, and I found myself unemployed. I was in my thirties with a wife, a baby and a mortgage, and I was unemployed, with no solution in sight. The fear I had was indescribable. In the space of six months I went from a normal everyday guy, to somebody who now needed help from everybody around him just to perform basic everyday tasks. My wife returned to work, and she is now the breadwinner in the house, a far cry from the plan I had of her staying home with baby and me looking after them. Cut to three years later, November 2019, and I’m actually worse now, condition-wise. But I’ve had a specialist who helps me, and it turns out that I likely had all this start when my body was attacked by those mosquitos, possibly giving me bad Lyme Disease. I’ve successfully received child maintenance and Personal Independence Payment (though these two deserve their own write-up for the stress they cause you, not just gaining them but the constant worry you’re not ill enough for them in their eyes because you have good days as well as bad), and things have settled down. I’ve now been told that as well as M.E., I also have a non-functioning bowel, and require an operation. I also have a slow transit stomach. In short, it’s a lovely day-to-day experience, because if one thing doesn’t hurt me, the other will.


But Who Is There?

My wife, bless her heart, does everything for me. Takes me where I need to go, looks after me on bad days, sorts out my appointments, talks for me, but most of all, she’s there when I need mental support. You see, not a day goes by I don’t think about ending my life. Not one. The shame I’ve brought on my family is just too much at times. My parents no longer talk to me, my mother because of the shame I brought her. My friends barely contact me, and when they do it’s either because they want something, or nobody better is there. I do have a couple of people who go out of their way to come and see me, understanding I can’t just go out on the pop any more. But … every day, every single day, I ask myself “is this right?” Is it fair I do all this, I put my family through this torture, this embarrassment? I’m lucky in a way, because while I’ve been abandoned by my own parents, my wife’s parents are just incredible, and help me out whenever they can. Financially, supporting me, just in any way. But it will never heal the hole left by my own family. A parent should never give up on their children. And that’s the key for me right there. It’s the reason why I haven’t done anything silly, and would never do anything silly. My little girl. As much as it hurts me to live, I know that in her eyes I would be the ultimate failure, and I could never, ever, do that to her.


So What’s Left?

Every day is a struggle. The drugs don’t work, they quite literally make you worse. You can’t plan what to do, because you don’t even know if you can do it. So, really … What is left? Well, working with a cognitive behaviour therapist, I’ve got a lot of things I do that really do help me. One, I run a support group on Facebook group called You & M.E. and my door’s always open for people who just want to chat. I love spending time chatting about articles and helping others, it’s what I live for. I regularly repost articles from here because they hit home so well. And two, I became a children’s author this year, and have released a series of books on Amazon called Cheeky Mouse & Friends. No, they haven’t set the world on fire, and they never will. I’m ok with that. I’m even planning on making a book where 100% of the sales go to M.E. charities. But illustrating and writing on my good days are extremely therapeutic. While some days I just cannot function no matter how hard I try, other days these small things help me to feel human, to feel like “ME”. And it’s ironic really, that a disease abbreviated to M.E. strips that very thing away from you.


In Closing

To finish up, I want to say that while M.E. does everything it can to strip you of what makes you YOU, you have to understand that what makes you a person isn’t your job. It isn’t your health. It isn’t the fancy car on the drive. It’s that smile you give when you see somebody you love. It’s those jokes you tell when you feel good. It’s that way you will never give up, no matter how hard life gets. But most of all, it’s knowing that while you may feel like less of a man/woman for having these troubles, you most certainly are NOT. You have control, so don’t let such a horrible illness get behind the wheel. Be the person you deserve to be, and love yourself. I know it’s hard, but you owe it to yourself, and to those who love you.


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