I hate to grumble, but sometimes having an invisible
disability is just infuriating. I was writing an exercise for my writing
recovery group and we always start by making a list, because lists are
something everyone can do. I saw in a resource book a list of irritating things
people can say to someone with an invisible disability. One of my personal
bugbears is ‘you look well’ which sounds fantastic, but completely stifles any
attempt at conversation because then I feel obliged to say that I’m fine. Also,
my connective tissue disease means that I often have a rosy glow across the
bridge of my nose. This rash means I’m bloody tired and my disease is probably
extremely active, but hey, at least I look
well.
When on crutches I often get the question ‘what have you
done to yourself?’ This question also baffles me; do I make up a fake injury
like a sprain or a torn muscle or do I tell the truth. I started saying ‘it’s
not an injury, I have an illness and sometimes I’m on crutches’. This reply
either lams them up, or the particularly nosey ones follow up with: ‘nothing
serious I hope’. I used to avoid this question by saying no and denying what
was wrong. It was too difficult to explain. Now I tend to say ‘I have MS’ and
deal with the mystified or horrified look I would get in return. You might as
well say you’re dying to some people. It’s not that I feel the need to educate people;
I’m just tired of denying the reality of my existence. I then absorb some of
the hurtful comments like ‘oh and you’re so young’, or ‘how did you catch
that?’ or even, on one occasion when my mum told someone what was wrong, ‘but
she was so pretty’. That one is wrong on so many levels I can’t even be
bothered to begin.
My most recent issues are surrounding parking. Our county
council is desperate for money and seemingly very keen on making people with
disabilities pay their way when it comes to parking. The first step was to
bring in payment for new parking areas – there were still disabled bays nearer
to the shops, but we paid the same as everyone else. Then a couple of years ago
they spread the rule to all council car parks, so the only way to park for free
was to park on the roadside, probably resulting in a huge rise in parking on
double yellow lines for 3 hours. One very brave resident, who suffered an
incredible amount of abuse from the general public, decided to legally
challenge the council on this issue. He argued that it takes a person with a
disability longer to walk and carry shopping so they were being penalised by
paying more for parking than the average able-bodied person who could get away
with parking for one hour. After being threatened with a judicial review the
council relented and now there is a two-tier system where you pay for one hour
and get two hours if you display your blue badge. This has led to queues of
blue badge holders at ticket machines doing mental arithmetic before they buy a
ticket. I imagine that roadside parking became many people’s choice, but I just
went into town less. Now even the roadside spaces are under pressure because
the council have brought in a new breed of parking inspector, working on
commission and hanging around roadside disabled spaces for anyone who tips ten
minutes over their three hour limit.
Consequently, disabled spaces are at a premium and
competition has become fierce. I often look perfectly ‘normal’ and this has led
to some interesting stand offs over spaces, especially with elderly people. I
have often had blue badges angrily waved at me when I nip into a space before
someone. The automatic reaction to this is to wave a blue badge back angrily.
Some elderly people think they have an automatic right over someone younger to
take spaces – sometimes when they have no blue badge themselves! I have been
told that my blue badge is not for people with sprained ankles. I have started
to feel furtive when parking in these spaces and even in the supermarket car
park. Should I be able to walk away from my car without as much as a limp? I
worry about what people will think if I wear a heel or carry a shopping bag.
What if I can put that bag into my boot and look ok? I shouldn’t give a shit
what other people think, but I do. If I’m having a good day I always leave the
nearest spaces for someone else, but how can another person know that I’m in
pain at every step or feel so tired I can’t walk any further. Or, on some days,
I just know that if I push myself a little too hard I will suffer later.
I have even been asked when producing or waving my blue
badge ‘what’s your disability?’ which is rude and insulting. My friend suggests
I try ‘it’s Tourette’s, now f**k off’. Even after I told them I had MS, one
elderly ‘gentleman’ told me ‘you look fine to me’. When I hear things like this
I want to swear, shout and stamp my feet – have a proper tantrum like a three
year old. I want to hire out a megaphone and stand in the marketplace shouting
‘I have MS’ over and over again. A very wise friend told me that it is
impossible for everyone to know my story; if they did know how much easier
would life be?
I never speak out on these occasions. I keep quiet. I keep
it in. I am not rude. I am even polite. Then I go home, and seethe and feel
bad.
I need to stand up for myself more. Be firm and tell people
to mind their own business. It helps to talk to other friends who have the same
experiences and write about it in my blog or journal to get the feelings out. I
have to accept that not everyone will see the truth of me, but that does not
mean it is not the truth.
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