I Have a Health Problem You Can't See, and I Feel Like I Have to Tackle It Alone

When you’re young and you have issues with your mobility that aren’t obviously signposted by something visible like crutches or a cast, it brings you up against some fairly unpleasant attitudes.
Publish date:
June 17, 2013
boyfriends, disability, knees, chronic illness, patellar subluxation

Read more from Amy over on our sister site, xoVain.

I’m 21, but some days I feel like I have the knees of a pensioner.

For about two years now, I’ve had problems with patellar subluxation: a condition that means that my knees don’t sit right, don’t work well, and have a much higher risk of moving out of place in a way that hurts like a bitch and makes me fall down occasionally (even if you’re curious, Google patellar anything at your own risk, unless photos and videos of disgusting wandering kneecaps appeal to you).

I can’t stand up or walk for very long, which means that medical necessity combined with my natural laziness sometimes resembles a heroic level of indolence.

I feel the need to preface the things I’m going to talk about by saying I was a little worried about writing this, because I don’t want to appropriate something that isn’t mine to talk about, as many people out there deal with much worse health problems than I do on a daily basis, so I feel almost like I don’t have the right. Practically all of the women and some of the men on my mum’s side of the family have some sort of knee issues. Sometimes my little genetic lottery barely affects my life at all, but sometimes I have trouble getting to my bedroom on the third floor. Aside from my close friends and my family, most people wouldn’t even be able to tell there’s anything wrong with me.

On the other hand, though, that’s the very reason I should write about it. I’m sure many people feel like I do: with an invisible health condition that leaves them stuck in the middle, neither entirely healthy/able-bodied nor identifying as disabled. That feeling of uncertainty is one of the most difficult things about having a health condition that impacts your life only some of the time or to a varying degree. I want to talk about health problems that you can’t see and you often feel like you have to tackle alone, and how I’m learning to deal with mine. When you’re young and you have issues with your mobility that aren’t obviously signposted by something visible like crutches or a cast, it brings you up against some fairly unpleasant attitudes. I was astonished when I started noticing how openly people often stare at someone who’s limping, as if it’s some socially unacceptable game of guess the injury.

Of course, I don’t expect people to be psychic, but often you’d think there was no such thing as being given the benefit of the doubt. I’ve been judged for using the lift instead of the stairs, being slow and in the way, fighting for a seat on public transport (it’s not like I’m not pushing grannies over to get the priority seats -- well, not unless they started it). One particularly unfortunate day, my knee subluxed on the tube on the way to a friend’s birthday party, and my poor boyfriend ended up having to half-support, half-carry me up the steps to the exit, while I couldn’t help crying silently in pain and panic. A businessman, enraged by the extra three seconds it took him to walk around us, tutted loudly and shouted, “For fuck’s sake!” drawing the attention of everyone within a six-foot radius. As a Londoner I know we’re not exactly renowned for our manners, but that’s extreme even for us, no?

Although more activity generally equals more trouble, it’s not always predictable when my knees are going to let me down. On multiple occasions, bouncers have threatened to throw me out of clubs when my knees have made me fall, thinking I’m on drugs or blind drunk. My mum has identical anecdotes from a couple of decades earlier. The thing that I find hardest about having a chronic health problem at a young age is how isolating it can be sometimes. I’m lucky in that my friends are generally really supportive and understanding.

As time and the severity of my knee problems have progressed, they’ve got much better at remembering what’s going on, asking how I’m doing so I can talk about it without sounding like a broken record and boring even myself, and altering plans to fit me in. I understand, though, how easy it is to forget that I can’t always keep up while walking, that I’m not good with stairs, or any other number of small but significant things.

It’s an impossible catch-22: I want everyone to remember, to have to deal with it like I have to, but I don’t want to be defined by it. I dislike how dependent it makes me on other people, I dislike asking for help and people having to modify their plans to include me, although, of course, it’s sad if they don’t. They can’t win, the poor things.

Recently though, I’ve realised I can’t wait passively for the world to change how it relates to me. I have to change my perspective first. In an unlikely twist of fate (he suggested “wonderful” as an alternative adjective), I’m in a relationship with an amazing guy who also happens to have a chronic health problem. It can be incredibly inconvenient; if both of our problems are flaring up, the simplest tasks can become an ordeal. More than anyone else, though, he’s been the one to help me deal with things, which is maybe surprising when you consider he’s got more than enough of his own shit to deal with.

He gets it all: For instance, the way you sometimes feel more like an observer than a participant, or the weird mixture of envy and protectiveness you feel watching someone do something you can’t. I can’t watch someone run on concrete without wanting to shout at them to stop ruining their knees, whilst he winces at the sight of a desk set-up that’s less than ergonomic.

Most of all though, he’s help me to recast something I raged against –- people not understanding or remembering -– as a positive; something that makes me feel strong instead of weak.A couple of days ago, we were talking about health issues, which is something we actually do very rarely, except about practical matters. He told me something that changed the way I look at sometimes feeling isolated.

He said, “It’s the private struggles that make you the strongest.” And I think he’s completely right. Looking at it like that gives me back the image of myself as independent and capable than I often feel I can’t live up to.

I’m willing to bet that the majority of people sometimes suffer from something hidden, whether it’s a physical problem or something emotional; small and occasional, or constant and severe. When you’re getting on with the most ordinary of tasks, you’re achieving more than anyone else knows. You can accept support from other people, but dealing with your issues on your own some of the time is something you can be proud of.