So it’s disability
awareness week at Royal Holloway! I felt like this was probably the best time to write this, though I've been intending on writing it for a while.
DISCLAIMER:
This is not at all intended to be a Ceri-Anne pity party (though honestly if
you do feel bad for me or whatever, please send me a redbull; I’m writing this
at 3am).
I mean if
you’re close to me or have been in the past, you’ll know that I suffer with ‘Postural
Orthostatic Tachycardia Syndrome’ (usually referred to as ‘PoTS’). It’s basically
an abnormal increase in my heart rate after standing. That doesn’t sound too bad
on the surface but that’s usually the case with most invisible illnesses;
because you don’t see them, you don’t realise how disabling those things actually are. I strongly feel that these things
should be written about because now I guess you can read what you can’t see.
Anyways, In
PoTS, the autonomic nervous system doesn't work properly. There's a
drop in blood supply to the heart and brain when you become upright
and the heart races to compensate for this. I’ve had it pretty much all
of my life but I was misdiagnosed at age 12, then correctly diagnosed with PoTS
at age 17. I cried when I found out. I fully sobbed because I finally had
something to explain why I can’t walk for more than 15 minutes without getting
ill, or why I can’t stand for more than 5 without getting ill, and why when I
know I’ll be out and required to travel quite a distance, I have to use a
wheelchair (which isn’t often because I usually just try to avoid standing
now).
When I say ‘ill’ I
mean a mixture of things, a few of my prominent symptoms are the following:
- · Feeling weighted to the floor (I describe this as trying to walk through water but the current keeps forcing against you and it gets worse the longer you stand for).
- · Dizziness and light-headedness (you know when you get up way too quickly and see stars? I get that, but like all the time).
- · Shaking, sweating, fatigue, and weakness.
- · Heart palpitations.
- Temperature deregulation (hot or cold, but mainly hot).
- Shortness of breath.
- · Exhaustion (If I’ve done a collective of a few hours walking during the day, I can sleep for like 12 hours which is ironic if you consider the next point…)
- · Poor sleep.
I mean, in all honesty
I could go on but the point of this post isn’t a ‘Woe is me!!!!’ type of thing,
part of me is listing some of this because I’m so fucking SICK of having to
explain why I’m sat down in the queue, or why I can’t usually finish a small
meal without feeling like it’s in my throat, why I can’t fully enjoy my nights
out because I can’t dance for more than 15 minutes without having to sit down
in intervals, why public transport is the bane of my existence (though, I’m
sure it’s like that for a lot of people tbf), why I was basically bedridden for
the hottest days on my holiday in Croatia, and why my job opportunities are SO
limited. I feel like a total burden to my friends when I say “Oh, I don’t think
I can do that, I’m sorry”. They often don’t seem to care but my disability
affects me every single day, and I can’t help but be aware of it because it
makes me feel like shit, pretty constantly. My school trip to America was
tainted by the limits I felt from a wheelchair. At the moment, walking from the
bus stop next to Founders to the Katherine Worth Building (Drama Department) is
the range of my walking distance whilst still feeling myself.
I know though that I don't have a disability that impairs me fully, I'm very grateful for that. I know that other people have disabilities and illnesses that I'd call worse... though, that shouldn't mean I should downplay this either yanno? My point is that illnesses
and disabilities aren’t always visible. For me, it’s a physical illness that I’m
primarily tackling (it affects my mental health by-proxy too). Many people
tackle mental health illnesses every single day and sometimes (could I go as far
as to say ‘usually’?) none of it is visible to the eye. Wanna know what’s shit?
I know more people who suffer with mental health issues than don’t. I don’t know
what that says about this day and age, but it suggests there’s a problem. It
wouldn’t be as much of a problem if mental health was more of a priority in the
eyes of the government, if the correct funding was given to the things that
could HELP people who suffer. But it’s not. Not right now. So I guess the
message there is keep an eye on people, especially those who you know already
suffer with these issues or have in the past.
What I’m trying to get
at is yes, both physical and mental invisible illnesses fucking suck, and as a
result of the inability to see them (though if you look at the details of someone,
you could potentially see it there), people disregard them. I make a joke about
my disability because it’s my way of dealing with the social awkwardness of
explaining. Does that mean I don’t cry when I’m on my own? Just because you can’t
see somebody’s disability doesn’t mean that it’s fake, attention seeking, or
mild. For many people they are dealing with such severe illnesses that they’re
potentially fatal.
I realise reading
through this that it’s an awfully negative blog post, I suppose though that this
is the one thing I would change about myself if I could though so… why wouldn’t
it be?
So if you see me sitting
down, I guess this explains why! If you fancy reading more I’ve linked a few
websites below explaining in a better way than I can. I’ve also linked some
mental health websites if you’re struggling! I hope this weird rant was a bit
informative at least! 😊
(Also, I wish I could
write this much for my uni essays! Well done if you made it to the end).
