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26 June 2010 @ 01:13 pm
An observation, of sorts.  
As someone who suffers from an 'invisible' illness, I often struggle in coming to terms with the use of crutches for necessity. When I first started requiring additional support for getting about, I was about thirteen years-old and it was more a matter of if-and-when I needed them, rather than consistently. When I relapsed several times over a period of two years, they became more of a prominent figure in my life but, once I got better, I consigned them to the garden shed, thinking that, if anything, they might come in handy if I accidentally broke my leg.

Which, of course, I have. Now, I've experienced the use of walking aids from two separate realms; the realm of 'support' to alleviate joint pain and the risk of collapse, and the need for complete reliance to help broken bones. Part of me, yesterday, felt ridiculous for going out again with the crutches in tow for M.E. symptoms. Judging from the looks I received on the bus and around town, I couldn't realistically justify myself to rely on a stick unless I had a mangled lower half. My confidence in using a stick for the purposes of broken bones has never been an issue but the confidence when it is a matter of keeping oneself upright for the majority of a walk, be it to the local shop or into the city centre, is a different matter altogether.

In this vein, I'd like to discuss the fact that some of the general population are clearly ignorant and impolite, too. When I'd bolstered myself enough to hobble outdoors, down the street and onto the bus, I noticed several young children eyeing me up, a few elderly people giving sympathetic glances and one or two folk simply bustling past. I thought, 'Okay, so it isn't that bad - you can't expect kids to understand and at least the old people understand'. Getting around town was something else even more entirely. From the moment I stepped off the bus, I was bumped into, knocked about and looked at unreservedly. I walked over to the Northern Quarter and popped into the 'trendy' Oxfam and, on my way around the shop, I accidentally caught the back of a young woman's ankle. I immediately apologised and in return, I received a glare - a withering, 'Good, you got in my way' glare. I left the shop embarrassed and obviously more aware of my stick placement. In H&M, the matter was similar, and the aisles are hardly large enough to accommodate an individual using walking aids, so I kept on finding myself attached to clothes or coathangers, or worse still, tripping over myself, with people ignorant to the matter barging past and knocking me. The Arndale Centre was somewhat easier as it is, of course, much more spread out but, again, places like Claire's Accessories and New Look were impenetrable. Claire's simply because the shops are so damn small, and New Look because I had to climb several flights of stairs as I (honestly) felt too embarrassed to ask if they provided a lift. At least, in Topshop they have escalators, though Topshop is again a place where the aisles are designed for anorexics with a set of fully-functioning legs. In queues, I could see some people contemplating whether or not to let me go before them (!), whilst others were genuinely very polite and allowed me to go ahead. I wanted to pop into a shoe shop for some wellies but gave up because the place was packed high full of school-kids and rowdy teenagers and, frankly, having had previous experience of said collectives kicking my sticks from underneath me, I shuffled off disappointed that I couldn't build up the confidence.

Also, for Manchester-folk - wouldn't it be nice for the Arndale to consider seating areas? Not necessarily near any food courts, but simply for people (pregnant, parents, those such as myself) to sit and recuperate, rather than struggle onwards, almost at the point of delirious exhaustion.

On my way back, something did brighten up this otherwise substantially draining and altogether confidence-knocking trip out; upon getting into the bus (and I took note that the driver did not lower the bus for me to get on with ease, causing some issues with getting in and out) a lady kindly offered her seat to me as she was sat in a disabled section. I declined but said 'thank you' regardless, as there was a spare seat just opposite which granted easier access. Nobody else occupying those two rows of seats did the same thing.

What kind of culture do we live in where young people are left to struggle? The world is so terribly concerned with itself that it neglects the few who need extra help. If I were in a wheelchair (heaven forbid, for that in itself is a trial and I wouldn't wish that on my worst enemies), the bus driver would've lowered the vehicle for me to get onboard, others would have helped push me and, in shops, I'd have not found myself being bumped into or given angry looks. However, in a wheelchair, you learn that very few shops have a policy on wider aisles, some people will laugh and point and, worst of all, will assume you take longer than they will so attempt to get in front of you in queues. The only place I have visited in all of my time as a 'disabled' person has been the Primark in Liverpool which prioritises wheelchair users in queues and offers a lowered counter so that there is no difficulty in grabbing bags or handing over money.

None of these matters will stop me from using my sticks when I require them but it is genuinely disheartening to be faced with such challenges. A hundred years ago, people were so much more polite and ready to assist (of course, depending on your class status and where you lived, but let's just pop on those rose-tinted spectacles for a moment). Today, we've become so trapped in our own thoughts that we no longer see the rest of the world until it collides with us, sometimes quite literally, and we return it with a nasty glance and a withering sigh.

I'm leaving this public because if anybody happens to stumble across this and wants to express any similar thoughts to their non-LJ friends (or those not on my F-List), they are welcome to.
 
 
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kashinthegreenkashinthegreen on June 26th, 2010 01:06 pm (UTC)
I feel your pain. I'm a closet cripple too (dodgy joints) and go through periods where I need to use a stick. I only use it when I have to make a trip, and I couldn't do it without, mostly because I hate the thing, it's cumbersome and it makes me feel self concious. The longest period I consistently used it for was when I was recovering from appendicitis (the surgery damaged my psoas muscle and various other bits of lower abs required for controlling my right hip). I always felt a bit guilty about the doddery old men who would hold doors open for me! I can agree with everything you said above, plus, the really irritating bit for me was people asking me why I needed a stick *all the time*, mind your own sodding business! I assume it is because I am young and fairly healthy looking, but it's such an intrusion.
Being pregnant now, with SPD I am resisting using a stick or gods forbid, crutches at all costs, you think you get pitying looks with a walking aid, try being pregnant with a walking aid. The questions would probably be a nightmare too (and people love asking you personal questions when you are pregnant), friends have often commented that saying I have SPD makes it sound like I have a venereal disease, and symphysis pubis disfunction sounds even worse!
The world also needs more benches for us to rest on. It seems in a lot of places they take them away to deter loitering. I have a particular issue with bus stops, the perching seats at bus stops aren't all that handy for me (they actually make my pelvis more painful) and I am pretty sure they aren't much use for anyone else with a mobility problem.
...oh_kimberley on June 26th, 2010 01:15 pm (UTC)
Oh, goodness - I can imagine pregnancy and using a stick is terrible. I've been told I'm at risk of developing SPD early on if I get pregnant. Apparently, the hormones released will make my Hypermobility Syndrome worse. I already suffer with horrendous pelvic discomfort so I can sympathise to an extent - obviously, I'm not carrying a wee one. I agree with the bus-stops too. The slanted benches and the veritable likelihood of sitting on them without falling off alongside attempting to support oneself is ridiculous. I've given up and, on occasion, enjoy protesting by sitting on a wall nearby or sometimes on the floor (though I usually get up five minutes before the bus is due because it takes *five minutes* to get up!)
I remember I used to get asked a lot more when I was younger about needing a stick. It would always be 'But you don't look like you've broken anything!' so I'd have to explain that, without said stick, I'd be dragging myself on the floor. They used to shut up soon after. I've seemingly collected friends of late with varying neurological and physiological disorders that mean we're practically a society of our own. It's good to know you aren't alone in the struggles but, oh, if only people would LISTEN, hey?
kashinthegreenkashinthegreen on June 26th, 2010 01:19 pm (UTC)
Yup, I am afraid to say I think it is my hypermobility that brought mine on too. I have never had pelvic issues before, just hips, knees, wrists hands and back, it is a new and interesting game, the best rounds of which include the turning over in bed game (must not twist, must not lift weight on feet) and trying to get up after sitting on a hard chair.
...oh_kimberley on June 26th, 2010 01:22 pm (UTC)
There is some evidence online to suggest that Hypermobility and SPD are linked. If you've ever found your problems exacerbated during your periods/ovulation, that's an issue too. I've done the turning over in bed game with a broken pelvis and, as it is now, with dislocations and it is ow, ow, ow! Luckily, I get my blokey to give me intense massages to manipulate the bones back into the joints so I can hobble rather than stay stuck in bed. Fingers-crossed you'll have a noticeable improvement as soon as little Nate is born! :)
kashinthegreenkashinthegreen on June 26th, 2010 01:26 pm (UTC)
I know a few people afflicted with both. Whether there is a direct link or not I don't know (well I doubt it as the causes are different, BJHS is caused by dodgy collagen, SPD is hormonal) but the relaxin in pregnancy definitely aggravates it. Normal people get a lot more flexible in pregnancy, so if you are already "too flexible" then being pregnant is only going to make it worse.
Trialiatrialia on July 3rd, 2010 05:16 pm (UTC)
Not to butt in, but having HEDS/HMS I actually find my dislocations etc. get much worse during my period, so I can absolutely understand how pregnancy would Not Help with that kind of thing!
urwen_sakurafu on June 26th, 2010 01:48 pm (UTC)
Wow, people are dicks. I'm sorry you were getting glares.
...oh_kimberley on June 26th, 2010 07:05 pm (UTC)
It happened more when I was younger - and at 15, it hurt a hell of a lot more. These days, I just frown back. It's a shame people can't be more polite.
Richard de Valmontdevalmont on June 26th, 2010 03:47 pm (UTC)
God, I really sympathise with you on that one, as you know I have people staring all the time, a tall, muscular fit looking guy limping along with a stick. I imagine they assume I've hurt my ankly playing rugby or I fell off my motorbike or something like that.
Sorry you had a poo time of it, sweetie. I'm sure nobody meant any malice, it's just not something people are used to, young apparently fit people with sticks and stuff.

Have a look at this, if you haven't before :www.butyoudontlooksick.com
...oh_kimberley on June 26th, 2010 07:06 pm (UTC)
I like butyoudontlooksick.com. I can't believe I've never been on there before :/ But yes, I know how bad it is for you (having been there, calling you a cripple but, of course, meaning it in the most loving well - or, even, WAY! - possible!). As a female, I suppose it's easier to pass off looking vulnerable and weak, whereas it's expected of a man to be upright and strong, not struggling to get about on a stick. Personally, it doesn't bother me because I know what's going on but to the rest of the world, you've OBVIOUSLY damaged something. There's just no other way of thinking.

Edited at 2010-06-26 07:07 pm (UTC)
thedinster on June 27th, 2010 08:55 pm (UTC)
Argh, that is horrible :( and I know exactly what you mean.

When I bashed up my knee in January, people on the train would look at me evilly because I took up a lot of space (I couldn't bend the fucked up knee so dared to stretch my leg out), and some people knocked it with bags and such which really fucking hurt. And I was bashed into many a time for walking slowly/limping, and no one bothered to help me on or off the train/stairs even though they could see I struggled with walking. Which is why it took so long to heal.

But, of course, as Mr Griggs said, the patients at his hospital have MUCH worse things with them so it was a doddle really :)
...oh_kimberley on June 28th, 2010 11:04 am (UTC)
Well, I suppose it depends. Jon would be dealing with worse cases but that's primarily because hospitals are places where you'll find all sorts of frightening things. I mean, I was the worst on my ward after my accident but I was, by no means, the worst in the hospital. He was just insensitive about your injury, unfortunately.

I had worse experiences in a wheelchair. I had a lady fall into my lap because she hadn't been looking at where she was going; another refused to move for me and I had one hit me in the face with a handbag because, again, I wasn't at a height to be 'noticed'. You've had experience of it but it is incredibly difficult for some of my friends who are virtually housebound without sticks or wheelchairs and face this sort of attitude on a regular basis. It's not fun and it's certainly dented my confidence with walking aids.
adamant_turtle: not life orderedadamant_turtle on July 2nd, 2010 03:54 pm (UTC)
Hi there! *waves* Just surfed on in, via my Google alert for "invisible illness," and just wanted to tell you I felt I could've written this all myself! Having had several serious chronic illnesses since about age 21, resulting in big-time mobility issues (while I can technically climb stairs, it's really hard, esp. if it's more than just a few). Everything can set me off, even a tiny breeze sometimes that will push me a bit off balance as I'm simply walking on level land; and stepping up on a curb? Forget it :-/

Anyways, you wouldn't believe the number of times people have come up to me and asked, "What's wrong with you? A sports injury or something?" As in, because I'm young (30 in a few weeks) it has to be something temporary, AND I have to be ok talking about it? (In these cases, I admit to being a bit mean...I tell people, "No, I'm always like this." And I watch them become uncomfortable, heh.)

Also, as much as the world has become so-called "handicapped accessible" these days, it's not until you have special needs yourself that you realize just how much it still ISN'T. Sure, there may be a ramp somewhere in a shopping plaza, but you may have to walk all the way out of your way, to the front of one particular shop, in order to get up on that curb, and then walk allll the way back to where you wanted to go in the first place. Little stuff like that, and I suppose that having a ramp at all is better than not; but it's hardly making a disabled person's life easier, is it?

I could go on and on, so I'll just shut up now... :-)