This is probably far more about acquiring disability than being born with it
Becoming disabled (or a significant change in the level of your impairment such that it affects your social relationships in a way it hasn’t previously) is pretty unpleasant for the person undergoing it. There may be the shock and trauma of having to, maybe quite suddenly, rearrange your life. The grief of losing abilities you used to have. The discomfort of accepting help you wouldn’t have had to previously. Being forced to go from being a private person to having strangers wash your genitals, and friends dress and undress you. The desperation at how helpless you might find yourself is a terrifying maw. The anger at the fate, at the world, the search for meaning, the possible realisation for you that there is no meaning, (or that there is, and you’re part of a plan in which your pain seems key). The frustration at organisation (high levels of physical impairment require a lot of organisation), the cost of medication, the cost of everything, whether the cost is in time, or energy, or pain, or money, the realisation that you have limits that you didn’t have before, limits most people simply cannot understand (‘but surely that can’t make you feel like this…!’), I don’t have to go on – if you’ve experienced this you’ll follow despite some differences, and if you haven’t, then just try, for a moment to imagine it, put yourself in that emotional whirlpool of pain, exhaustion, and all those feelings. Try.
Now imagine if everyone went out every day showing exactly how we feel. Maybe that’d be a good step forward for society – I can’t judge on that front, though it seems a step forward – but as it stands those of us accustoming ourselves to durability having a severely increased impact on our lives would be trampled by the world because expressing emotions also often leaves you far more emotionally raw. However, after most (though by no means all) traumatic events (I most liken this to grief and loss) society allows people some kind of emotional space to heal, and friends are often there to listen. With disability, I’ve found it doesn’t. Because there are Other People. Other People look at you and realise you acquired a disability. They may understand why, they may not, (you may, you may not), but this is quite frightening on one level for them. It’s like someone your age dying – it could have been you. If it wasn’t you then you’re probably quite relieved. Other People look at a newly more disabled friend, and realise that it could have been them, only… it wasn’t. Other People are pretty terrified by this often (according to my research of… asking Other People). They’re slightly shaken that they dodged the bullet. They need comfort. They need to know that life is going on. They need to know that it isn’t all that bad. Just in case. So they don’t have to worry.
So far, this is alright, albeit uncomfortable, but then Other People come to us with our chang[ed|ing] disabilities and all the accompanied internal chaos for comfort. Not necessarily explicitly – but now that they’ve seen this ‘horrible thing’ (someone becoming disabled) happen, they need to see that it’s alright. It’s obvious to Other People that our lives have changed a lot and they need to know that we’re okay, and cheerful, that we still come out, and see them, that we’re doing ‘fine’ when they ask – maybe a bit ‘tired’ from time to time, but that we don’t say so often, they need to be reminded that we’re ‘looking well today’ and if we’re really not, they then get concerned and need reminding that this aspect of the disability is small and easily cured while the whole picture sits in the room like an elephant with four wheels and a cushion. They need to have us tell them that we’re okay to reassure themselves that we’re okay, that they’re being Good Friends (not just being Other People) and most of all that if it happened to them like it did to us they’d cope with it as well as they think we are coping with it.
We get forced to become the Cheerful Cripple, a trope in which whilst we are disabled we are also happy and positive about it and never sad or depressed by our impairments. This expectation is also there to remind us that this is the only way they can adapt to our changes – by acting like there’s nothing emotionally wrong. If there were something – if we were upset by it Other People like to think that they would want to know but the acquisition of physical impairment and its impression on mental health (especially for those of us who had mental illnesses as well to start with) is so far out of their frame of reference that they feel completely incapable of framing a response to our emotions, much like we may have struggled to frame the emotions ourselves. I know at times I’ve tried to talk to people with other types of disability that are not acquired physical mobility impairments and they’ve been like a lot of Other People, either having dealt with this so long ago they’ve forgotten it, or more often seeing it as an alien experience.
It’s okay for people to react in different ways and everyone is entitled to their own emotions, but the pressure a reaction of expecting us to be positive places on disabled people is immense. Rather than being allowed to be however we are, and expressly to work through feelings about an emotional response somewhat analogous to grief, we’re expected always to seem content with our lot so that our friends don’t have to admit that they’re frightened – for us, but also about how this could be them and what would they have done and how would they cope. Instead we are forced by Other People to be positive about it so they don’t have to worry about our feelings but also about what theirs would be. It’s not okay to put that pressure on someone regardless of their situation but especially when they are experiencing a major, ongoing life trauma that would impact on them significantly,
What Other People ultimately do is force us to appear happy and positive, even by expectation and minor reaction on their part, rather than allowing us to be honest about our lives and them to face their fears. And it forces us to hide that anger, that collection of emotional responses that we have to our disabilities yet again, to lose yet another of those shrinking places where we might have hoped to find not pity (which is what we get when they realise we can’t do things we used to do freely) but a friendship with substance.
People tell me there’s a point they reach where they’re at peace with disability, but the people I’ve heard that from don’t have conditions that are ever-worsening – every day, week, month, another step iller with no idea when it will end. People tell me that even in this situation I will reach peace, that I have to be patient, I’ll feel better soon. I hope they’re right. I really goddamn hope that they’re right that there is peace, but for as long as there isn’t, we’re allowed to be angry.
We’re allowed to feel like our lives have been stolen, we’re allowed to hurt, and to curse the universe and ourselves and our bodies, and we’re allowed to be shocked, and scared for the future, and if we’re not serenely taking to our beds, or being happy cripples, ask yourself what to expect, and whether you’re capable of standing with your friend emotionally and honestly where you can. If you can’t do that then admit it to us, don’t force us to show you the right emotions to comfort you on the topic. My impaired friends, please, let yourself feel however you feel and as much as you feel about being disabled, even if you’re scared it’ll lose you friends to feel it. If you keep masking emotions this vast it’ll damage you and your friendship will grow a damaged core wherein the emotional truth about such a huge part of your life is hidden.
You will probably both gain and lose friends over a major change in your disability but you will probably have fewer of them afterwards – people who couldn’t cope with you not being a Cheerful Cripple or with the new limitations your body places on the friendship. However you’ll be left with the kind of friends like the ones who dropped all their weekend plans to stay at mine so I would have company and an eye kept on me as I lay vomiting through a weekend as I reacted to a medication change. Losing friends is agonising, especially losing them to something already this traumatic and difficult to manage but please let your friends be honest with and about themselves, their boundaries, and their bodies – and try it yourself. I’ve heard it can be nice (I’m being a bit silly here but also trying to acknowledge that to a point the more impaired one is then the more pressure there can be on one’s boundaries because they differ so far from the ‘normal’ boundaries and that it is typically good to respect your own boundaries.)
(Note: I used ‘we’ and ‘they’ having discussed this with several others who have had the same experience, but it might not apply to you, obviously
: Major edits done because I uploaded an old draft first and this one is newer and better.)