Three things I wish people knew about living with life-threatening impairment

One of the hardest things about living with life-threatening impairment is actually not dealing with my situation, but with peoples reactions to my situation. Here are three things I wish people knew about living with life-threatening impairment

Content note: discusses suicide, references sexual violence

One of the hardest things about living with life-threatening impairment is actually not dealing with my situation, but with peoples reactions to my situation. People constantly presume how I must feel, and then react to me based on that – when they’ve wildly misunderstood how I might feel. These are three things I want people to know about living with life-threatening impairments and how their reactions to my situation affect me. I want everyone to know that it is more than possible to live a fulfilling, rounded, happy life in my situation, and that often the biggest impediment to me being happy isn’t my impairments, it’s how people react to them.

1. My life is not a tragedy, and I’m glad I was born
When I discuss my situation, I’m always met with a small flood of pity. People think it’s a tragedy that I’m born, and a tragedy that I’m living in this situation. Well, I wouldn’t change it for another one. Who I am has been shaped by living with long-term impairment, and  I can’t imagine changing it to become a different person. I’m not Jamie + impairment – my whole character and being are shaped by my experiences, and thus I can’t say that I wish I didn’t have my condition, because I’d be an entirely different person, and I like who I am.

2. No, I’m not always thinking about death.
The problem with living with death is that it gets very boring indeed. You can’t only think about death. It’s just not that interesting. I’m making long-term plans in my life, including studying, writing, and building a network of adult friends. I’m doing an internship. You might wonder why I’m starting a course that will take four years – I don’t know what the future holds for me. My life expectancy is likely to be normal – unless I get the one infection which finishes me off (and a few of them have had a good go at this). I’m not going to sit on my backside thinking of death and waiting for it. I’m going to get out there, bite the bullet, and get on with life. I’d rather regret things I’d done than things I hadn’t, and if I start on this course and become too ill to finish it – well at least I learned something.

3. If you were in my situation you probably wouldn’t kill yourself either.
I get told all the time that people think if they were in my situation they’d kill themselves. I understand that, because I understand the terror of uncertainty. Not knowing what to expect from my health in the future has triggered suicidal feelings before, but I’m still hurt, upset, and offended when someone says this to me. 

Recently, a district nurse came out to dress a pressure area for me, and brightly told me how lucky I was I didn’t have MS and that if she had MS  she thought she’d kill herself. My condition has led to complete lower body paralysis by my mid twenties, with increasing upper body problems, so I was a bit taken aback. My prognosis isn’t clear at the moment, but my pattern of deficits isn’t that different from what someone with MS would experience. I was thrown that she thought I was lucky I didn’t have it, and very thrown by her casual remark about suicide.

I have considered suicide due to the level of my impairment, and am very glad that at each point I’ve been heavily dissuaded by the health system, and supported by the majority of my friends and acquaintances, both well and ill. Despite this, I’ve encountered this attitude more times than I can count, and I worry for someone being told this at a time when they were fragile

When you’re telling me this, you are saying that it would be better for myself and the wider world were I to be dead, You’re telling me that you think my life is so miserable as to be better if it wasn’t happening. You preclude any space for me to assert that my life is good and valuable (even if I face challenges). You make my theoretical suicide into something socially acceptable. Rather than turning round and offering me support to make my life worth living, you tell me that because I am disabled my suicide would be reasonable. Normal. Understandable.

This makes my life worth less than anyone else’s. It says structurally that you believe no resources should be put in place to prevent my suicide. At a time when disabled people have an unemployment rate 30% lower than non-disabled people my survival is less valuable to you than yours. At a time when we are twice as likely to be in food poverty, our work is undervalued to the point that where we can get jobs at all, we earn 15p less per pound than non-disabled people. At a time when we are more than twice as likely to experience every type  of sexual and non-sexual abuse than non-disabled people, and disabled women are twice as likely to have experienced sexual assault in the last twelve months as non-disabled women you think I would be better off dead. Telling me preventing my suicide should not be a priority is just another piece of evidence that I am living in a world which does not want people like me to thrive.

Before you open your mouth, have a think about what the effect of hearing what you’re saying might have. Consider whether you’re replicating a world-view in which disabled lives are worth less than non-disabled lives. Consider whether you’re implying that we can’t live whole, rounded, and happy lives. I don’t want another stranger to tell me how miserable the situation I’m in makes them. Instead, tell me that I look sharp, or ask where I got my shoes. You still get to feel good about talking to The Disabled, and I come away from it feeling complimented, rather than feeling like I’ve been told yet again how worthless my life is.

I’m happy. I’m happy where my life is and I’m happy with where it’s going. Onwards and upwards.

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