To you, dear Reader. (I’ve always wanted to start a piece of writing that way!)
Happy New Year
I don’t know who you are, and you probably don’t know me, but I wanted to remind you of something: you are still here.
It might be that this year has been amazing, in which case, that’s wonderful! I’m happy for you and I hope it continues. Or it might be that you’re ending this year wondering if you can make it through the next. If that’s the case, then sit here with me a while, and let me tell you a story.
At the end of 2017, I was reaching the end of two years mostly-housebound after an injury in 2015. I’d just received two medical diagnoses that confirmed two things.
1) I wasn’t going crazy. I really was sick.
2) I wasn’t going to be cured anytime soon.
By the end of that year I’d been told by various doctors that I was either anxious, suffering from a delayed stress reaction, malingering, or quite simply wasting their time. This is the case for many people with chronic illnesses — particularly women, who wait an average of 4.6 years to have an autoimmune illness diagnosed, and are invariably told their symptoms are all in their heads by at least one doctor along the way.
It was a year of feeling like I was dying, lying in bed with headaches that felt like ice-picks, and emerging from them only to watch the walls sway and the room spin, while my muscles screamed as though I’d been running marathons in my sleep. It was a year of dragging myself into doctor’s surgeries, too sick to form sentences and argue for tests, while each doctor looked at me benignly, and told me only to do more exercise, and come back again in a few months’ time.
It was a year of watching my savings slip away, with no hope of work, and no chance of benefits (because there was no diagnosis, and the DWP is nothing if not unyielding). Eventually, it became the year I did get a diagnosis, only to realise that it was only half of the picture. I’d been telling myself all of that time, naively, that whatever they would discover would be easily treated. I’d pinned all of my hopes on it.
When they find out what this is, I’ll be able to live again.
What I actually discovered, was that my illnesses would take years to unpick, understand, and treat.
At the end of 2017, a few days before Christmas, I lay in bed staring into the yawning void of 2018, knowing — not suspecting, knowing — that the next year would be more of the same. And perhaps even the year after that, and the one after that, ad infinitum into a bleak and lengthening future. I didn’t want to die, and yet, I thought it might be my only option.
I’m not sure that I can describe what it feels like, to so desperately want to live, and to be well enough to participate in the world again, but to question whether or not you can bear to spend another year with your body failing, the medical profession dismissing you, and the government refusing to help.
That night, I got an email. A tax bill from 2016, during which, for the first few months, I was still working full-time from home. It was for £994.81. I read it with a burst of electric adrenaline, and felt myself crumble and break. I’m not a natural crier, not usually, at least, but I sat up in bed and sobbed myself into paroxysms. How could I pay this, when I could barely afford my rent? How could I survive another year without work? How could I hope to make money if I could hardly take care of myself, and how long would it be before anyone would listen to me?
I didn’t want to die. I wanted to get out of bed. I wanted to go to work. I wanted to go out dancing, book a holiday, drink a beer and walk into town. But I couldn’t, and I didn’t know if I would ever be able to again. I didn’t know, age 26, if I could live another year, ten years, twenty years, or more, in the state I was currently in.
I didn’t know what to do. And so, I did the only thing I could do.
I stayed alive.
And it wasn’t an easy decision — not a single choice made once that lasts for a lifetime. It was, for many months, an ongoing process of saying simply: I will still be here tomorrow.
Because I knew, at the end of 2017, that the next year would be more of the same. I knew it as surely as I know the sky is blue and politics is a hellscape. But you see, the thing is, I was wrong.
This year, I have still been sick. I was right, in the sense that there is no quick cure, easy treatment, or simple remedy to make medicine and government move quicker and do more good. (If I ever discover how to make that happen, by the way, I will graciously accept a Nobel Prize).
But there was also joy. A third, wholly unexpected diagnosis, discovered thanks to disability campaigners online, gave me a simple treatment that lifted some of the vertigo, and lessened some of the headaches. I began to think a little more clearly, and from my armchair, I began to write again. The words still didn’t come easily — I am still not as articulate as I used to be — but for the first time in years, they came.
I started to write about my experiences, and people, amazingly, listened. I found people online with stories just like mine — tales of disbelief, gaslighting, dismissal, and disability. They welcomed me into the community and told me tales of their own. Suddenly, I wasn’t the only person fighting for help, but part of a whole community around the world who were doing the same.
With the new treatment, I got to leave the house again a couple of times a week. This year, I’ve sat with friends in the pub. I’ve been able to go out with my boyfriend. I went to see Hamilton, and visited new places. I’ve even adopted a cat!
And I am still in pain. I still get headaches, and vertigo, and too many other things to list, but I’ve started to manage them with help from people online. And I’ve discovered that there is a life like this. At least, a life I can take some joy in, even if it’s not the one I would have chosen.
I am still lightyears away from a cure, and I know I will always be sick, but everything else has changed. At the end of 2017 I was sure I would feel hopeless, helpless, and useless forever. I was certain I couldn’t take a second longer of fighting, with my body, with the medical profession, and with the government. But I did. I stayed alive.
If I hadn’t, these are just a few of the things I would have missed out on this year:
1) I wouldn’t have found a community online who know just what I’m going through.
2) I wouldn’t have had short stories published in magazines, and articles published by the press.
3) I wouldn’t have adopted my cat.
4) I wouldn’t have spent my 27th Birthday visiting with friends in London.
5) I wouldn’t have sat in the sun eating ice-cream during one of the hottest summers on record.
6) I wouldn’t have read new books, listened to new music, and learnt new things that made me go wow.
Quite simply, at the end of 2017, I was certain there would never be happiness again in my life. I was sure that I would never be able to enjoy a drink, or take a walk, or read a book again. But now, today, I can look back on 2018 as probably the best year I’ve had since I got ill, and no-one is more surprised about that than me.
If 2018 for you has been in anyway the same as 2017 was for me, I want to tell you that I understand. I know how much it hurts, and how hopeless it seems. And I want to remind you that you are alive. You made it through the year, and if you don’t think you can make it through the next one, just make it through the next day.
Keep on making that choice. Make it as many times as you can. And whatever you think you know about the next year, forget it. You can’t know, anymore than I could, what the next year will bring. And you won’t know anything at all if you aren’t here to see it.
So just remember for now that you are alive, and that sometimes, that is enough.
Happy New Year. It will be a better place for having you in it.
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