Or “Why I talk about my illness and disability so much and why I don’t talk about what my life would be like if I were well”.
I am very straightforward about being ill and how it affects me. I openly discuss diagnoses, symptoms and treatments with friends and I write about my illness a lot on here. Through the number of times my posts on chronic illness are being shared and the comments and commentary I see on and around my posts, I know that what I say here reflects the experiences of other chronically ill people. That recognition of shared experience feels important to me; we are a scattered community and many of us are alone or isolated in some way in offline life.
It’s in my offline life that I am sometimes accused of being “blunt” and I guess I am. Almost all of the time, I don’t pretend I’m okay when I’m not. I can hide a great deal of pain but I won’t deny it if I’m asked how I am. My stick (or wheeled walker) and my gait and other visible signs of disability I don’t hide. When people are getting to know me, one of the first things I make sure to tell them is that I have an incurable chronic pain and fatigue problem and that means I can’t really do x, y, z things and I might need some assistance with p, q, r things. I know I could just say “I can’t do this” and “I need some help with this” but it feels important to me to get the “incurable, lifelong pain and fatigue” said and understood. People don’t like hearing it and don’t know how to react and I can sympathise with that. But I need the people around me to have realistic expectations of what I can do and what my life is going to be like and getting “There’s no cure” and “I am in pain” heard and understood early on stops awkward conversations later on.
The other reason I’m so very blunt here and everywhere about how ill I am and how it’s incurable is, well… it’s a mental defense strategy. I *have to* be okay with being ill, I *have to* make myself comfortable with the knowledge that this is normal now – the alternative is spending my life grieving for a future that never happened, the life I could be living. It’s not that I don’t think about it sometimes, I do. It’s more that my mental energy is better directed at thinking up possible futures for myself *that I actually have half a chance of making happen*. There’s a lot that I can still do, a lot to work towards. I have no choice but to be okay with having all my plans and dreams from “before” fade into nothing and replaced with plans that centre what’s really important to me.
And so I’m blunt with others. To shut those “But what if you get better / if there is a cure / if you try this snake oil?” conversations down instantly. To practice being okay with the word “incurable”. To hand part of the discomfort our society has with illness and ill people to the other person to carry so I don’t have to deal with it.
To make myself into someone who accepts that his reality is real and okay, someone willing to work with what’s he’s got, someone grounded in the reality of his body with all its needs and capacities and limitations.
That’s why I don’t talk about what it would be like to be well. Imagining wellness for myself means imagine something my doctors have told me is virtually impossible. I don’t want to get emotionally invested in an idea of what my life could(n’t really) be because I don’t want to deal with the inevitable frustration and disappointment of never being able to achieve it.
I’m blunt because I’m honest. With myself and with you. Illness is my reality and it’s likely to be my future. I won’t sugar-coat that for any adult person. I’ll be honest and clear and my voice will not tremble or break when I say that this illness is life-long and disabling. I have to live with that. If you want to be part of my life in any way, you have to live with it too.
Addendum: above is entirely about my personal experiences, if you think it’s about you it maybe is but it’s also about dozens of other people. “There is no cure” is a sentence I have actually heard spoken to me by actual doctors, as are the words “incurable”, “chronic” and “progressive”. If you suggest I could “get better” you won’t be the first but you’ll still be wrong.
A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.
So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.
As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂
In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.
Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.
So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.
*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.