About

Why I Write About Living With Depression and ME/CFS

Sometimes I’m afraid that my blog comes off as one enormous whinge. I talk about a lot of the negatives of my life and who likes a constant stream of negativity? The problem, of course, is that having depression is really crap, and having ME/CFS is really crap. There’s no way to dress that up. Certainly good things happen to me, and, as I pointed out in yesterday’s post, having fun and doing things that make you happy are incredibly important with any chronic illness. But the overall situation? That’s not good, and that’s why my blog posts tend to have a negative slant. So I thought I’d explain why it is that I do this.

1  Because it’s important information.

Lots and lots of people still don’t understand mental illnesses, even the ones you’d think most folk would have encountered, like depression. Lots of people also don’t understand ME/CFS – quite a few still don’t even believe in it, or think it’s psychosomatic, including medical professionals. Sometimes it’s because these people are huge bigots, but mostly it’s because they don’t have the knowledge they need to deal with it. Perhaps they’ve never come across these illnesses personally, or perhaps other things have seemed more important than trying to understand their friends who are mentally ill or have ME/CFS.

There is tons of information out there about depression for those who care to look for it. It’s hard to excuse people for being ignorant on this one, to be honest, but if it comes across a friend of a friend of a friend’s path and they learn something, I’m really happy about that. There’s much less information about ME/CFS, and there’s a lot of inaccurate, damaging information out there too, which can easily be all that somebody finds if they just do a quick search. There’s still lots of people like me, blogging about their experiences, trying to get the word out. But if even one or two people get to understand this illness more because of my blog, or are helped to be a better friend to someone in their life who is chronically fatigued, then I’m really really pleased.

I only have a very small sphere of influence. I have comparatively few friends on Facebook, and only a small number of Twitter followers, and not everybody I know will read what I write. But that’s fine. To help one person to a greater understanding of what it’s like could still have ripples. I’m happy to put my small contribution out there, just in case. It’s better than not doing anything.

2  Because it’s one of the few things I am able to do.

As a feminist, it’s frustrating not to be able to contribute much to the spread and rise of feminism because of my illnesses. There is a problem with many feminist spaces being exclusive of many feminists (trans people, people of colour and disabled people, for example), but for me, attending events isn’t generally an option however inclusive they are (see my post on loneliness for some explanation of this). My contribution is mostly limited to liking and sharing things on Facebook and Twitter and signing petitions, and it can feel pretty futile. So writing this blog is a small thing I feel that I can do: sharing my experiences as a depressed, disabled, bisexual, cisgender white woman.

3  Because I might not be able to do it forever.

It’s over two years since I had the illness that triggered my ME/CFS, and ever since then I’ve been steadily getting worse. I’m still getting worse and I don’t know when it’s going to stop. I’m doing my best; I’m doing everything I’m supposed to do to try to halt this. I’m still hoping that things will level out soon. There’s no guarantee, though, and there’s nothing to say that even if they do level out, they won’t suddenly start going down again in a few years. It’s a thing that happens. There may come a day when I can no longer type; when I can no longer concentrate long enough or think hard enough to be able to put these words on my screen and post them to the internet. It’s one of the things that scare me shitless, to be honest. But I want to do my bit while I still can, and I do want my friends to understand what’s happening to my body while I can still explain it, in the hope that they won’t desert me if one day I can only go on Facebook every six months, or not at all.

4  Because despite everything I’m still an idealist.

It’s like some kind of weird disease; I just can’t stop. I have this strange, deep down belief that the world can become a better place and that I can help with that. My logical mind is by no means convinced that this is true, but I cannot purge my soul of it. So I always hope that some terrible bigot will somehow come across my blog and realise the error of their ways. It’s pretty unlikely, but that, friends, is my weird-ass brain.

5  Because it’s a way of getting some of my frustrations out.

That little story I told in my post about priorities? It’s been bugging me for five years. My brain just isn’t the kind that can forget about a thing. I’m a grudge-bearer and I’m not even sorry. Writing about crap stuff, while it may not always make me feel better about the stuff, at least helps me to feel that I’m not alone with it.

6  Because writing is what I do.

I have always written. I have mostly written fiction, but I was always an excellent essay writer, although my tutors at university were divided about my casual style; some loved it and others hated it (I refused to change it). Some people make vlogs to tell people about their lives; some people make art; some people make music. I write, it has always been my instinct and my love.

2 thoughts on “About

  1. I tried to DM you on Twitter but could not to suggest you use a DWP visiting officer to help you fill in your PIP form. It means your mum won’t have to and they are kind, helpful and effective. I’ve referred several people to the visiting service professionally and all of them have got the highest rate of the benefit they applied for. You can self refer. I’ve been really impressed by the service they’ve delivered.

    Like

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