Jenny's perspective: Misconceptions about ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

When I asked Jenny to write a blog post for me, I had no idea what she was going to write. When I read what she had written for the first time, I realised that it was exactly what I needed to hear. I also realised that I should have brought up these issues by now. These things need to be said, and I'm so glad that Jenny has said them!

My name is Jenny (different Jenny), I’m 21, and I’ve been ill my whole life. I’ve had M.E for the last 2 years, and so for M.E Awareness Day I wanted to draw attention to the common misconceptions surrounding this illness. If you don’t suffer from it, I hope it opens your eyes a bit. And if you’re a fellow sufferer, I hope it makes you feel less alone.

1. We're antisocial

I’m not ignoring your text, I’m napping. I’m being quiet because I’m in agony, I’m not in a mood. I can’t come out for drinks tonight, even though I’ve been looking forward to it all week. Please don’t think I’m losing interest. I’m not being antisocial, it’s just that my body is demanding all of my energy right now and there’s none left over for you. Sorry.

2. We're not interested in your life

Now this one might just be me. I think quite a lot of people don’t want to tell us when they’ve done things in case it’s seen as “rubbing it in our face”. But I want to know. Whether it makes me a bit jealous or not. I might not be well enough to do everything that you’re doing, but that doesn’t mean I don’t care how it’s going. How was your night out last night? What about the date you went on last week? Please don’t stop telling me things. Chronic illness can be boring, I need gossip. ASAP.

3. We're lazy

I think this one is more relevant for family members/flat mates, as opposed to general friends, but you never know. There’s a reason I haven’t done the dishes. There’s a reason I’m not getting my own glass of water. There’s a reason I don’t go to work. And it’s the same reason for all of them – I can’t. Not right now anyway. It’s most definitely not a case of “won’t”.

4. We just need to be more positive

This is maybe the one that annoys me the most. Positive thinking is not going to cure me. I’m not being overly negative. I’m not fuelling a negative cycle. I actually find my symptoms are worse when I’m in a particularly good mood, not a particularly bad one. Negativity is not the reason I’m sick. I’m not sad, I’m sore.

5. We did this to ourselves

Is almost everyone with M.E a type A personality? Yes. Does this mean it’s our fault? Absolutely not. I wanted to live my life to the fullest, I gave it a go, and now I’m like this. But I didn’t do anything “wrong”. People smoke, and drink, and take drugs, and do all sorts of things that are a risk to their health. Trying to get a degree, or working part time, or going to the gym, are not the same thing. My body failed me. M.E stole it from me. That isn’t my fault.

6. We're over exaggerating

I can 100% guarantee we are all under exaggerating. “Fine” isn’t fine, it’s just not completely unbearable. If I want to moan about it, you should let me. If I don’t want to talk about it, that should be fine too. There’s no “wrong” way to deal with something that has completely turned your world upside down. So however I’m choosing to do it, let me.

7. We're weak willed

I’m not ill because I’m not trying hard enough to get better. I’m not “letting this happen”. I haven’t given up. My body’s broken, but that doesn’t mean I am. The friends I’ve made through having M.E, fellow sufferers, are the strongest people I know. Nobody can battle 50 symptoms every day and be weak willed. You have no idea what you’re talking about.

8. We're doing it for attention

Now this one is just ridiculous, but I get this idea thrown at me all the time. M.E isn’t something I chose, or want. I don’t want attention for it. I very VERY rarely talk about it. Because when something takes over so much of your life, sometimes you just want to talk about anything else. I don’t want to be seen as “the sick one”, who would want that sort of attention? No thank you.

9. We're lucky we don't work/go to school

“It must be nice to be able to nap all the time”. Naps are nice when they’re a choice, not a necessity. Having to sleep 20hrs a day is anything but “nice”. Being left behind while everyone else is off enjoying themselves, isn’t my idea of a good time. I would do anything to be able to live my life like you live yours. And yet you think I’m the lucky one. You’re blind to your own luck, because you don’t know what it’s like to be without it.

10. It can't be seen, therefore it's not real

On the whole I’m quite glad I can hide my illnesses from people. If I chose to hide it from you, to really hide it, I could. You’d be none the wiser. Trust me, I’m really good at it. If you’ve seen me struggle with it, that’s because I chose for that to happen. On the flip side, because it’s “invisible”, how can I prove it to people that don’t believe me? I struggle for my life every day in ways I hope you never understand. So do 17million other sufferers. How ignorant to decide something you can’t see, must be false. That all 17million of us are deluded liars. The pain I feel is not in my head. It’s real. It’s SO real. And if we could swap bodies for 60 seconds you’d realise that. I’m almost sure that if someone woke up and instantly felt as bad as I do, with no warning, they’d think they were dying. You think I’m kidding, I’m not. M.E feels like your whole body is shutting down bit by bit, and somehow you’re just meant to get on with your day regardless. Nobody knows the cause of M.E, maybe there are different types that haven’t been categorised yet, who knows. One thing I do know, is every single one of us is telling the truth. You can snap out of a lie, you can back track, there’s no snapping out of this.

Thanks so much to Jenny for writing this blog post, you can find her online at @jennymcg_1 on Instagram.