1) No matter how debilitating and terrible your pain, people will not feel like standing up to allow you a seat.
I don’t know why this is. Once when all the disabled seats were taken up on the bus (by non-disabled people) and I was left clinging onto a handrail for dear life and biting back tears, my dad told me no-one would offer a stick to a person with a walking stick who “Looks too young and healthy”, aside from my complete inability to stand up on a moving bus. There are two standards of bus etiquette, one of which is standing up for the disabled, and the other of which is standing up for the elderly, and as a young disabled person, you are likely to come off worse than an old healthy person, since we live in a society that respects the elderly and vilifies the disabled.
Predictably/unfortunately, I have no idea what we can say to society about this. If you find yourself desperate for a seat on a bus when all are gone, you are well within your rights to ask people to move.
2) People will always ask you what your stick is for.
This is more or less born out of genuine concern, but it is also an example of how young people are encouraged by society to be accountable to everyone else, always being prodded to overshare and explain themselves to others. When I first had to get a walking stick, my friends asked me about it with a perplexed grin as if they were expecting to hear that I’d got really drunk and fallen down the stairs at a club. Nope, increasing pain and immobility due to malformed feet. Hilarious. Yesterday I was at a party in a bar, and a man I have never met before asked me in a rather commanding tone whether I had hurt my leg. “Nope.” I felt rude, and also embarrassed, but I had to remind myself that it was him who started it. It is unacceptable to put someone in a position where they have to disclose their medical conditions to you. Of course you can tell people if you want, but mostly the reasons behind pain are multiple and complex.
Try “Hitting nosy bastards.”
3) People will always assume it is going to get better. Recently when I have been describing my plans for the future, the adults (by which I mean the adults more than ten years older than me) around me have asked whether I think I will be better able to walk by the time I am in work/going on holiday/living alone and expecting me to have an answer. This, while coming from a generally caring place, stirs anxiety in me because it belies an idea that you can get better by planning ahead.
This is probably thought to be particularly true of young people, who are always being told that we can achieve anything so long as we aim high enough and don’t let little things like physical boundaries get in our way.
To most people with health problems, the future is by no means certain, and lately I have been thinking that it is probably more helpful to learn how to live with the walking stick – moving house, getting a job, travelling – rather than putting everything on hold until a wishy-washy dream of painlessness comes true, or bullying myself about being ill. People do not question that a middle-aged or older person may need a walking stick their entire life, but they cannot seem to stop waiting for a young person to return to a status quo that may never exist again: Maybe it won’t get better. Chasing a false normality has ceased to seem like the answer to me. While I won’t stop looking for treatment and or cures, this idea that “It will all get better soon” is indicative of a general societal tendency not to take the health problems of young people seriously, as well as to assume that when you have difficulty walking you just need to try harder.