This post is a difficult one for
me. I would never have written it but
for two things:
- reading this post from Anne
Wheaton and seeing the response to it; and
- having to write a ‘realist’
story for university (I’m lost when I can’t include at least one ghost or
spaceship) and my flatmate (also a writer) suggesting I write about my illness.
When I was a kid and a teenager,
it felt like I had something wrong with me all the time – infections, growing
pains, injuries – you name it. I
wondered whether I was a hypochondriac or had a lower pain threshold than other
people. Ballet classes were a constant
struggle. I never could hold up my arms
or legs as long as the other girls, despite the fact that I had twice as much
muscle. When I was about 15 I had a
meltdown in Drama class at school. I’d
never had a problem with school and couldn’t understand why it was suddenly
getting to me, especially in one of my favourite subjects. I was sleeping a lot, but everyone said
that’s what teenagers did, so I didn’t question it. Then I was diagnosed with mild Chronic
Fatigue Syndrome. That explained the
exhaustion, but not the other things – it was just another problem to add to
the list.
Throughout my 20s, continued CFS,
disappointed dreams and a boring office job weighed me down physically and
mentally. I knew I was depressed, but it
went officially undiagnosed. Eventually,
I moved countries, looking for a fresh start and hoping to break away from it
all.
My new employers soon realised I
was struggling and sent me to the doctor.
I was diagnosed with Clinical Depression and, after much reluctance, research
and deliberation on my part, I was put on anti-depressants.
One thing I’d never done was
break a bone (although I did once get hairline fractures in the tips of my toes
from pointe work – oops!) I had multiple
back and joint problems, though, including regular migraines and some old
injuries that felt like they’d never properly healed, and I often saw a
physiotherapist. One day, she asked me
to lie on my side and I obliged. She
gave me a funny look and said, ‘Is that how you normally lie when you lie on
your side?’ I said yes, and she made an appointment
for me to see her manager. At that
appointment, her manager asked me to do some strange things, then asked me to
lie on my back, put my arms straight up in front of me and move them up and
down. I obliged; she made a funny noise
and said, ‘One of your cervical vertebrae moves when you do that. I’m pretty sure you have Joint Hypermobility
Syndrome.’ I said, ‘I have
what-whatety-what-now?’ I’d never heard
of it. So off I went to see the
rheumatologist at the hospital and he confirmed it: I had Joint Hypermobility Syndrome. ‘So,’ I asked him, ‘does that mean I’ve been
misdiagnosed all these years, and I don’t
have Chronic Fatigue Syndrome?’ He said,
‘No. In my opinion, you’re unlucky
enough to have both.’ Joy.
The reason I’d never broken a
bone was that people with JHS (also abbreviated HMS) don’t tend to break; we
bend. We bend way too much. Sounds
pathetically minor or potentially awesome, right? Compared to what some people go through, yes,
but what it means is that our muscles have to work twice as hard, all the time,
just to keep our joints in the right place (which also means it takes twice the
effort to do things, including just sitting still). Our joints subluxate
very easily, and it’s not just our joints that are uber-flexible; it’s all our
connective tissues. That means it
affects our internal organs, as well, causing things like IBS. The foremost researcher on JHS is a professor
in London who has recently retired, but he believes JHS is actually a slightly
lower grade of Ehlers-Danlos syndrome. I
have to say, I attended an eight-week pain management course with both JHS and
EDS patients, and our symptoms were pretty much identical: pain, exhaustion, injuries caused by stupid
things like brushing hair or opening drawers, IBS, clumsiness/spatial awareness problems,
sensitivity to cold/heat/noise, inability to stand or sit for long periods,
depression, migraines…. Additionally,
local anaesthetics don’t work very well on JHS/EDS patients, so to that idiot
doctor who cauterised my warts when I was a little kid and wouldn’t believe me
when I told him it was excruciatingly painful:
So that diagnosis explained
everything. I hadn’t had multiple
problems; I’d had multiple symptoms from one illness (later two). And I didn’t have a lower pain threshold; if
anything, it’s probably higher than normal, but I’m genuinely in pain 99.9% of
the time.
Of course, what all three
illnesses – CFS, JHS and depression – are is invisible, and this is the biggest
problem: people forget we have them. But just because they’re invisible doesn’t
mean they don’t affect us in visible ways.
The greatest effect has probably been
to my career. I would have loved to
pursue music or musical theatre, but I simply didn’t have the energy or the
support I needed to pursue it. So I
spent 14 years, which is longer than you get for murder, these days, in a
line of work I had no interest in, and that sucked all my energy and left me
with none for the things I enjoyed. I
was bored out of my brain, and since one of my depression triggers is
boredom…well, you can see the problem right there. My psychologist said he believes I have a
form of PTSD – not from any one trauma, but from having to spend every day in
an environment that so completely clashed with my personality. First World Problems, I know, but you’d be
amazed how all the little negative effects add up. Still, I’m the kind of person that does
things 100%, even if I don’t enjoy them, but I soon discovered that even that
wasn’t good enough. In a corporate
environment, it’s all about the mask you put on (which is one of the reasons I
don’t get on with it – I like it when people are ‘what you see is what you
get’). At appraisals I’d be told I
needed to ‘put on a face’ to hide my exhaustion. What they could never seem to understand was
that I was already putting on a face.
What they were seeing was the spillage.
All three illnesses affect concentration, and make it difficult to shift
your focus from one task to another. I
was frequently told that I looked annoyed when my bosses gave me work. As far as I was concerned, I was there to be given work, and I wasn’t the least
bit annoyed, so why was I being told I was feeling something that I
wasn’t? Eventually, I worked out that
the effort it took to refocus from
the task that was interrupted to
listening and understanding what the interrupter was saying to me was showing
on my face, and they were reading it as annoyance. (I have since found another friend who says their
‘efficient concentration face’ also gets read as ‘**** off!’, so I’m not alone
in that.) In hindsight, the effort it
took to constantly justify myself and prove that I was working to get better
had the opposite effect on me. Never
once was I told my work was at fault – in fact, it was often praised; only the
way that I looked. When a new manager
called me into her office and all but told me she wanted me to quit, not
because my work was bad, but because of my illness, that was the final straw. Doing the work and doing it well was clearly not
enough. I made the decision to leave, even though it made me feel like she’d ‘won’, and
go to university. Still, I got a lot of
very helpful medical treatment during that time, so I guess that good can come
out of all things. (I want to add that that manager was an exception - most people there were fantastic and a joy to work with; the main problem was the nature of the corporate world.)
I suppose the second greatest
effect has been on my social life.
Depression has odd effects, like I can get blindly angry at the
smallest, stupidest things (although very
rarely at my friends, I have to say – usually just at things), and I have occasional memory-recall problems and anxiety
issues, all of which affect friendships.
Invisible illnesses are difficult because you never know how you’re
going to wake up. You could be walkin’
on sunshine or drowning in the rain. You
could be full of energy or in so much pain you can’t move. And, as I said, people forget. I can’t tell you the number of times I’ve
been invited to something by someone, been unable to go at the last minute
because of illness, and never been invited out by that person again. I quite like being spontaneous, but I can’t
be. It takes days to prepare both
physically and mentally for going out, especially if it’s somewhere noisy
and/or without chairs, like a club. When
I lived in London, I wanted desperately to go out with my friends and
flatmates, but rarely could because I never knew until the last minute what
they were doing. When you have an
invisible illness, you are painfully aware that you are a wet blanket. Sometimes, you need to feed off other
people’s energy just to survive. The
weight doesn’t help, either. I don’t
care how many times people tell you that looks don’t matter to them; they
do. People started treating me
differently when I got above a certain weight.
But when you need to exercise to lose weight but are not allowed to (and
aren’t even capable of it)…what can you do but hide in the back of photos and
shop at the old-lady shops?
All of this caused a gradual
stripping away of my personality and my confidence. I guess years of doing the best you can and knowing
it’s still not good enough will have that effect, but it’s not only that. I can no longer trust my body. I can no longer trust my mind or my emotions. I used to enjoy driving – I found it relaxing
– but now I’m terrified to get behind the wheel because I may not see something
or react in time, or I may misjudge a distance due to the spatial awareness
problem. I have no faith that people
actually like to have me around – I’ve been a wet blanket for so long that I’m
sure they’re just being charitable. I
make a joke and beat myself up for the rest of the day about the stupidity of
it. I constantly think of myself as an
inconvenience to people, and feel the need to make myself as small and as blank
and as invisible as possible so as not to inconvenience or irritate them
further. (Although I’m not going to lay
full responsibility for that one on the illnesses – some people I’ve known have
had a knack for making me feel that
way.) I love fashion, but look like a
librarian. You can imagine how the
downward spiral of depression operates in these circumstances. I’m anxious about the future – how do I go
back into a full-time job? What if I end
up back in my old line of work? Tackling
new things is terrifying. Even speaking
on the telephone is an effort in anxiety-control, because it involves thinking
on my feet and having to remember things or solve problems on the fly. There have been so many times when I just
wanted it all to stop; wanted the world to go away. I’ve not had suicidal thoughts since I was a
teenager, but I can tell you there have been several moments when, standing on
the edge of the road, I’ve thought, ‘If I was just hit by a car, I could go to
hospital and then I wouldn’t have to go to work or look after myself or make
the effort to keep up appearances. It
would be the best holiday ever.’
I didn’t want this post to be all
negative; my intention was to help people understand what it is like to live
with an invisible illness (or three), so they can understand when someone they
know is in that position. The good news
is, things have improved for me since I left the office environment. University has been tough physically and
mentally, but I’m so much better off without the boredom. You learn, over time, to deal with the pain,
take each day as it comes, and ask for help when you need it (as hard as that
can be). But it means living by
adjusting and readjusting and compensating and even missing out on things, and
that has ripple effects. I may not get
to do what I want to or go where I want to; I may react strangely to things; I
don’t have the life I want, by any stretch of the imagination. But I do believe it is possible to have an
enjoyable life and to do something with it that’s worthwhile, and I do believe there
are people out there who genuinely care.
For a long time, I didn’t believe those things. I still don’t know what my future will be
like, but I have learned and am still learning coping strategies that I know will
make it better than the last 15 or so years have been.
Lastly, I just want to say that
if you are depressed or struggling with thoughts of suicide or self-harm,
please, please ask for help. It’s nothing
to be ashamed of. Mental illness is no
different from any other physical illness, and it’s treatable.
Things never to say to someone with CFS, JHS/EDS or depression:
- ‘If you’re extra flexible, why are you so stiff?’
(Answer: Because my muscles are working too hard and/or are injured.)
- ‘Why do you talk to yourself?’
(Answer: Sometimes it’s the only way I can concentrate.)
- ‘You always get sick.’
(Answer:
Yes. I have a LONG-TERM illness.)
- ‘Didn’t you just have a nap?’
(Answer:
Didn’t you just have a drink?)
- ‘We’re going out to a club in
15 minutes. Do you want to come?’
(Answer:
If you’d told me a week ago so that I could get my head and my body
prepared, I would have been there with bells on.)
- ‘You could always get a job in
a bar.’
(Answer: Right, ’cause getting a job where I’m carrying
glassware and standing on my feet for hours on end is a great idea.)
- ‘You don’t seem very
enthusiastic.’
(Answer: If I managed to get here, I’m
enthusiastic.)
- ‘Cheer up.’
(Answer:
Do you need a slap?)
- ‘So you’re better now?’
(Answer:
Arggh!!)
You know you have Joint Hypermobility Syndrome when...
