a sort of ineptly computer-painted crying face

Living With ME: Despair

Life has been hard recently. It’s hard to say how long for, really. At the outside, I could say life has been hard since I was about ten and discovered the fickleness of friendship for the first time. It’s never been the same since.

But, for the purposes of today, the last few months have been really hard. The last few weeks in particular. Trying to face up to the fact that living as though I’m going to recover is harming me. Trying to accept that this is my life now. I have no idea how to find acceptance, much less happiness.

It seems as though my life is over.

I feel despair.

Dictionaries define despair as things like “to lose all hope”, or “to be overcome by a sense of futility or defeat”, but it is more than that.

There’s the purposelessness, and the deep misery. There are so many concepts held within despair that the dictionary completely fails to touch.











(We all know that dictionaries are subjective, right?)

I googled ‘how to live with despair’ but it wasn’t that helpful. I don’t think I can get rid of my despair, not just like that. That’s why I wanted to know how to live with it. But you don’t get that from the internet. You get articles bursting with good advice on ‘overcoming’ despair, and ‘pushing through’ it, and ‘fighting your way out of’ it. There are many splendid active actions you can take which will give you hope and meaning and light.

Keep a diary. I don’t technically keep a diary because I’ve never found any point in writing purely for my own eyes. The idea of it is that you write about your feelings and thoughts, though, and I do that in this blog, and in a couple of online support groups. I find these things incredibly helpful and would be lost without them – but they haven’t touched my despair.

Change the aspect of your life that is causing you pain. That would be my chronic illness which I can do literally nothing about, then. I do what I can to mitigate my symptoms, of course, but I’m still getting worse and I can’t change that. There are so many situations where a person might feel despair and be unable to change the thing that is causing it that I almost want to laugh at this – if it weren’t for the fact that people in horrible situations are constantly being told that it’s their own fault and that if they just made the right choices they could change things and be fine. This is a lie. If you can change things, then there is hope. Despair threatens when you can’t.

Do something good for somebody else. This is always nice. Has it ever healed someone’s despair? I don’t know. It doesn’t heal mine. There are many things I can’t do – anything requiring money or my physical presence. I do what I’m able to and while it feels nice, it doesn’t touch my despair. Why would it?

Call the Samaritans. Helplines are a truly wonderful resource and the Samaritans have saved many, many people. But I already have people who can give me everything the Samaritans possibly could in my situation. This just isn’t relevant to me.

Come to terms with your situation. Which sounds so very easy, but it’s not, as anybody who has had to come to terms with any situation will know. Perhaps I’ll manage it one day, but even if I do, I have no idea what that will look like for me.

Live in the moment. But what happens when the moment is shitty? When every moment is shitty? When, even when you have moments of happiness and joy, life is still a heap of shit? I hate the moment.

Exercise. Well. That one’s a no-no for me. I can’t comment on whether it helps with despair; it has never done anything for my mood even when I was able to do it. It’s certainly no panacea.

This too shall pass. Only it won’t, will it? Not for me, not for lots of people. Some people find this a true comfort, but many can’t connect with it at all because it’s simply not true.

Don’t make big decisions. This is clearly not advice meant for long term despair.

Fix your eyes on Jesus. This is, of course, quite irrelevant to a lot of people. As for those who do follow christianity, many churches still teach that despair is a sin. If a person looks to Jesus, prays enough and reads the bible enough, they will be fine. If they aren’t fine, it is strongly implied that this is their own fault because they haven’t led a christian enough life. This, all of this, is a lie. Despair is not a sin and feeling it does not make you a bad christian.

Talk to someone. Yes, I do this. All the time. Therapy might help but it might not, and it would cost so much energy (and money), even if I could get a therapist to come to my home. So yes, to an extent. Certainly without my friends and support network I would be in a much worse place. Talking helps, it helps so much – yet it doesn’t take away the despair.

Ask yourself what this experience is teaching you. That I hate having ME/CFS? That your life can be snatched from you at any time and at the same time force you to stay alive and watch it disappearing?

Think positive thoughts. My personal favourite. Fancy me not thinking of that. Phew. Problem solved!

One article I read, disgracefully, advises its readers to understand that they are most likely just being narcissistic and ‘indulging in the fantasy of how hopeless their situation is’. This writer clearly has no idea of what despair is.

I did have hope, for the first year and half or so of having ME/CFS. I believed inside myself that I would recover, even as I knew logically that I might not. But I didn’t. I got worse and worse and worse. I don’t know how much worse I will get. I may recover yet, of course, but false hope only brings pain and betrayal, and to believe that recovery will happen is false hope.

It wouldn’t be so bad if this was a terminal illness; if I knew I would die. Death is scary, of course, and people would be upset, but I would know that this wouldn’t last forever. As it is, though, I may quite well live into old age. Many people with ME/CFS refer to it as a living death. Not a life, not a death. The idea is horrifying.

I hate every day of my life. Yes, I have good days and moments of joy and delight. They don’t touch the despair. They can’t alter how much I hate my situation. I want it to stop and I don’t care how.

This isn’t quite like my usual posts. I generally try to have some central focus that I talk about. Today I’ve just taken a word and set down all my thoughts about it. I don’t know if it means anything, but perhaps that fits the topic.

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