I’ve been musing on this post for a few weeks now. Having finally come to the conclusion that I’m not going to stop feeling a) too tired and b) too busy to write it, I’ve decided I may as well write it anyway, tiredness and busyness be damned.
So: I’ve been hearing the same comment, or perhaps more accurately the same type of comment, over and over recently and there seems also to be a particular type of person who will make such a comment. And it’s that kind of comment that is very obviously well-intentioned but still very hurtful but it never really seems appropriate to explain why it is hurtful at the time and besides it has taken me a while to figure out quite why I feel so hurt by it.
The comment is always some variation on “Hopefully you’ll be walking around without that thing soon!” where “that thing” is the walking stick that means I’ve been able to keep some measure of independence over the last year and a half. I then point out that it is incredibly unlikely that I will ever be able to walk unaided again as standing and walking is so painful and exhausting for me that I cannot do it unaided, my stick is the only means I have of walking at all and my condition is lifelong, there is no known cure and the treatments that currently exist are mainly pain relief and resting. At this point, the person who originally made the comment tries to tell me to “Stop being negative” or that I should “never give up” and tries to give me medical advice despite not being a doctor and only having a surface level understanding of my condition. This is usually either a dramatic increase in exercise (something that could severely worsen my condition), some rather dubious change in my diet or the suggestion that really I’m just depressed and if I stopped thinking negatively I’d have boundless energy and be able to walk unaided and pain-free. Ha, as if – and incidentally, I do also have depression in addition to my fibromyalgia. While the two doubtless must interact, it is certainly not so simple as “Stop being depressed and you’ll be able to walk without a stick again”.
What do all of the people who have made such comments share? Firstly, they see me irregularly but fairly often – less than once a month but more than once a year. Second, they are not themselves disabled or chronically ill (or in the one instance of another person with fibromyalgia doing this, they do not have mobility problems). Third, they see me often enough to feel that they know me and have a relationship with me (as a friend, relation, tutor, porter, provost, regular bus driver, friendly local shop assistant etc) but not actually often enough to see the day to day, week to week effect of my illness and disability on my life. In other words, what all these people share is that they care about me and want the best for me but they are not in a position to know what “the best for Liam” actually is.
It would be sensible for people to accept that the people most likely to know how best to deal with my chronic illness are me, the people who care for me on a daily basis and my doctors. Something makes them forget that and makes them make these comments and I think I know what it is. Fear.
Yes, fear. I think these people who don’t see the days in bed or the regular taking of the three different pain killers, who don’t see me sitting on the floor by the fridge to put my shopping away because going to the shop has left me too tired to stand… I think they find the sight of this young man walking with a stick disconcerting. So disconcerting that they want the stick to go away so they can go back to thinking that everything is okay or that I’m just remarkably tired today and will be fine again tomorrow. The stick makes it obvious to everyone around me that, like it or not, things are not as they used to be, I am disabled and there is no pretending otherwise.
Even if that’s not what is actually going through their heads, it is what their words and actions communicate to me. People who couldn’t (or wouldn’t?) see the problem when I was still holding on to walls and furniture and other people to walk suddenly saw it when I started to use a stick. And they started to repeatedly suggest I stop using it and to become increasingly adamant that I won’t always use it the more I insist that I need it. People started to say that my condition seemed “better” or “worse” based solely on how close to a normal gait I managed whilst walking without considering that perhaps just like them I walk slower when I am tired.
I know I can’t see instead people’s heads and know what they’re thinking or feeling but the message I get over and over from people is: “You should prioritise looking more ‘normal’ and less disabled. We don’t want your disability to be so glaringly obvious and if we can’t make it go away then you should at least do other people the courtesy of making it look like it’s gone away. We don’t want to accept what has happened to you, we don’t want you to be different, we want to go back to being able to pretend nothing is wrong. Our way of walking (unaided) is inherently better than your way of walking and you should aspire to walk like we do because your way is inferior”.
That’s the message I’m getting, even though I know people are really only trying to say “I hope things improve” or “I wish you didn’t have to live with chronic pain”.
Here is my answer (or at least, what I sometimes wish I said instead):
“Walking without a stick is not a priority for me or even really a goal of mine. It’s not really that important to me and I don’t understand why it seems so important to you. I much prefer being able to get around using whatever aids are most suitable – whether that’s a stick, crutches, a rollator, walking frame or wheelchair – to being able to walk unaided because without mobility aids I can’t get very far and would need to spend days in bed recovering. I much prefer being able to get around and see the world but looking unusual and moving in a nonstandard way to being able to look and move more or less like most other people but confined to a tiny area.
Please trust me and my health professionals to make informed and considered decisions about my treatment. Please trust me to make informed and careful decisions about my mobility and care needs and accept that my priorities may be different from yours. This is my life, my health and my disability – trust me to manage it myself and ask for help or advice if I need it.
I don’t consider using aids and adaptations or finding new ways to do things to do every day things to be “negative thinking” or “giving up” – for me it’s just realistic to modify the way I do things to make them easier, less painful or less tiring for how my body works now. Continuing to try to do things the way I used to will only hurt and frustrate me whilst allowing others to pretend nothing is wrong.
I don’t care if how I do things like walking or carrying things or putting on a coat looks weird, I just care about achieving what I’m trying to achieve with the least pain and energy expenditure possible. Worrying about how odd it looks would only make these things more tiring. And besides, variety is awesome.
My way of walking (and dressing and eating and talking and being…) is not inherently inferior to yours and trying to make myself look more like you, trying to assimilate into a non-disabled people’s culture, really wouldn’t do me any favours. Just like you, I’m just going about my life trying to survive and to live and be as awesome as I can be – I can live without the pressure to conform as well.
My body has changed and I have adapted to it. There’s no sense trying to force it to change back by acting like the change never occurred. My body doesn’t work like other people’s bodies, there’s no point pushing it to measure up to rules and ideals that were never designed to accommodate it. I can only work with what I have and I have a body that needs a bit of extra help to walk, a body that needs rest, a body that needs pain relief – a body that needs me to find ways to work with it not against it. I have a body that, despite everything, I love and care for and who would subject that which they loved and cared for to standards it would be bound to fail?
Walking without a stick is not a priority for me. Maybe one day I’ll do it, maybe one day I’ll need a wheelchair, maybe I’ll always use a stick. None of these is inherently a “better” outcome as far as I’m concerned – as long as I can get to places and live my life I don’t really care how I move. It’s just not a priority.”
Note: This is about how I personally feel not about how “disabled people” feel or should feel. If you feel differently about your own mobility problems, that’s okay!
Further note: Yes, I still go through periods of grief and upset over my inability to walk unaided. I cannot always manage to feel okay about what has happened to me and frankly it would be weird if I was able to easily accept this. HOWEVER I do have to accept that I have mobility difficulties now, that they are unlikely to go away and that I need to find ways to get on with my life in the body G-d has given me cos no one’s going to bless me with another one.