a diagnosis, and why that's so important

back in 2010/11, we went to our GP saying I was having a lot of pain in my legs. I was referred to physios, a neurologist, to have orthotics. no-one ever said there was something specific wrong. I was periodically discharged and shoved back in to various services until 2014/5 when everything got worse - put into more departments. they all said I shouldn't be under them.

fast forward to 2017, in widespread body pain every day, walking with a cane, struggling to stay up for more than a few hours. I got through my exams hanging by a thread, each day another blow.

a few days ago, I saw an adult rheumatologist. I saw a paediatric one last year, but he was a bit useless; he said I couldn't have one condition because I was going to school and he said another was outdated.

I didn't go in with any expectations - I've been pushed from pillar to post for years on end and I'm so exhausted that I'd kind of given up. but this doctor was brilliant... she didn't have any context about me because it was the first time I'd been to that hospital and my referral letter apparently got lost, and she actually let us talk, she actually listened.

I walked out half an hour later with what I'd wanted for so long. doctors have always said I'm "really hypermobile" but have never given me the diagnosis, resistant. it was so ridiculously simple that I nearly cried - she did the test (beighton/brighton) and was like "...yeah no you're definitely that".

so. now I feel like I'm not faking. now I feel like I have a route forward. yes, we have to make more referrals and it's going to take a lot to get me to a better place. but, it's going to be slightly easier.

my name is Charli, and I have HMS/hEDS.

it's not everything about me that you need to know, but it's a big part of my life and has been since I was 10, and so, I don't want it to be erased. I don't want people to tell me "your disability doesn't define you", because in a sense, it does - and that's okay.

it defines me because it changes my entire life. it doesn't define me because once you know that, you can get to know everything else. more than one thing can define me, and that is okay.

a lot of medical professionals say "you shouldn't be looking for a diagnosis, we just need to treat the symptoms" but I think they're wrong. if there is a diagnosis, it should be made, because then you understand the body as a whole. for years, doctors have been looking at my legs, my hands. never my whole body together.

friday was overwhelming. I might have thought that that was my condition for years but... I never felt valid. I don't have anything against self-diagnosis, but I personally can't do it because I don't feel valid.

for some people, it's just an acronym. but for me, it's a twist in the path. this long, long metaphorical path to me being in a place where I can function. not for me to "get better", because that's not going to happen, but there might be things that help reduce it all... and to me, that's enough.

on reflection.

Today, on the 21st of June 2017, I finished my GCSE exams.

2 years ago people were telling me I wouldn't get here. Either I'd have to drop subjects, be pulled back a year, not even take them. There's nothing wrong with any of these options... But I never wanted to do that. I was so determined.

With no sugar-coating or exaggerating, it's been an awful few years. In year 9, the panic attacks started and I moved school, which was the best decision of my life. I was so sure that GCSEs were going to be my time. It went south quickly when I ended up in inpatient mental health care and out of school for five months.

But I kept going. Got out, returned to school as soon as I was allowed. And then my physical health got worse, and I've been ambling through year 11 through all the pain and panic attacks, and the clouding fatigue that makes me barely awake for some of my lessons.

I don't care what I get anymore (unless I don't get into sixth form, but that's a bridge to cross if we come to it...). I know that I did my best. I sat every single one of my exams, I put pen to paper. I answered every single question even if a lot of it was rubbish (looking at you, physics...).

This post is mainly for myself, because some days I forget how far I've come in two years. I've gone through my GCSE period struggling and ill, and sometimes I forget that. Now, I'm in pain and it's hard, and I'm walking with a walking stick, and my anxiety still strikes at inconvenient times. But now, I can get on a bus where I couldn't for months after inpatient. I can tell people what I need. I can express myself more easily.

I did it. And GCSEs may not have been my time, but A-levels will be. And if they're not? Then university will be my time.

There is always more time. I have to remember that.

what I've learnt in my 1st month(ish) using a mobility aid

So about a month and a half ago, my legs started essentially buckling under me, but I've been struggling with my walking for a long time. So, we decided it was the best decision for me to get a mobility aid - a cane or walking stick, whatever you prefer to call it. It's quite nice, to be honest - the handle is purple marble, I'm a fan. But it's been an interesting experience... so here's some thoughts.

(After writing note: it's worth saying that when I use "you" here, I'm referring to me rather than anyone else - it reads like I'm saying it will be everyone's experience so I just wanted to clarify that I'm not saying that at all, it's just my writing style)

1) You've essentially lost a version of a superpower - everyone is going to ask questions now.

There's pros and cons to being invisibly disabled; no-one knows what you're going through unless you talk about it, which is great because you don't get questions, but it's awful because they don't see that you are struggling or anything is wrong. So now, everyone knows - except they don't. Question after question after question. You have to deal with it, and you're going to look like the bad guy if you won't tell them your medical information. Everyone thinks they have a right to your information just because you have a visible aid.

2) People don't like teenagers with mobility aids.

I was far more anxious about going to school with my cane than I was about going into the general public. I shouldn't have been. I'm 16 and when I walk with the stick, apart from the buckling, my walking looks quite normal. My walking looks normal because I have the stick, not because I don't need the stick. But people don't know that. People glare and stare and will occasionally tut as they walk around you to get somewhere quicker (looking at you, middle-aged white business man...). I got the nastiest look from a man with a walker and it kind of disgusted me that another disabled person looked at me like I was faking. Yes, I'm 16 - but teenagers can be disabled too. How many teenagers do you know who think it's cool to walk around with a walking stick?

3) People who know you are going to find it hard.

Not necessarily your inner circle of friends, like the ones you spent every minute with who know you've been struggling with this... But teachers who don't know the details, family friends, family you only see once a year. And you're going to think that they should think it's a great thing because you can finally get around more easily again, but they're not going to immediately see that.

4) Kids genuinely think it's okay to shout across the corridor at you.

At least five times now I've had lower school kids ask me why I have a walking stick across the corridor and I generally just ignore them because otherwise I'd probably be really sassy or say something inappropriate. It's slightly humiliating but after a few goes, you get used to it. Shout out to that one girl that told her friend to leave me alone after her friend shouted up the stairs at me, it made me smile a little bit.

5) Your back and shoulders are probably going to hurt even more.

My back and shoulders have always been one of my more painful spots, but now they hurt so, so much pretty much all the time. I'm used to being in pain nowadays so it doesn't matter too much, but it still hurts and it's not a great addition to my life. However, the cane is really helping... Swings and roundabouts.

This post sounds really negative but I'm being quite cynical because the view on disability here is strange and a little bit disgusting. Walking is easier and life that few percent less difficult, and I really appreciate the support I've had from my friends with it all.

-Charli

the supermarket (charli writes poetry)

possible trigger warning for anxiety/panic, hospital

the supermarket

it was the morrisons.
it's tucked away, a little way from
the big roundabout in the middle of town -
the morrisons we went to
whilst i was inpatient,
but never before nor after.

and it's just a supermarket
and if i told someone that it made
my breathing unsteady,
they would laugh and call me crazy -
roll their eyes and wonder
why i have to be this way

but we used to go and buy
snacks and the latest kerrang
(i needed to keep up with the music world
whilst i was cut off from the rest of it)
and when my dad visited,
eyes laden with concern,
we took him to the cafe there.
i had a toastie - it tasted like cardboard and dust
(what a true cliché)

my favourite thing
when i was there
was buying the christmas chocolate
feeling less alone
more connected to reality
not just the two corridors that made up the ward.

and it's just a freaking supermarket
i never thought it'd become my kryptonite
- not considering what else i've faced -
until we drove back into that car park
(two storeys, slightly disconcerting)
and i felt my stomach drop

and okay fine it's just a supermarket
but my mind associates it
with darkness and shouts and alarms
and being trapped -

or rather, the minutes i got to spend
not trapped, not with the darkness.

the same, but different. (charli writes poetry)

Today I faced my biggest anxiety, which is seeing a family member after four years due to a really bad fallout. And now I'm home and want to process so... I'm going to write.

the same, but different.

i'm the same as i was back then

(four years ago)

pen all over my hands,

the frizzy hair,

my backpack full of books.

but i'm not.

i wear skinny jeans,

i have splints adorning my arms,

i learn concepts larger than life.

my values are still spelt out,
loud and strong
(too loud for most)
and i still tend to be cuddled
away in a hoodie.

but i've learnt how to be diplomatic,
how to do no harm but take no shit,
and i just know where i want to be.

and yes, i still wear trainers,
and no, i still don't like fish.
but i am not who i was
and neither are they.

their house felt so much smaller
but the situation was so so big.
and she -- she looked so withdrawn
and there was this lack of regret
but i am okay.

the hand-soap was the same brand
and they haven't even had a new tv.
the picture of me age 5 still lay on the mantelpiece...

there was such an air of vulnerability
tentative, tangible vulnerability.
but i am okay, and it is over now.

the frustrations of undiagnosed chronic illness

My name is Charli, I am 16 years old, and I suffer from chronic pain and fatigue. I have hypermobility, tight joints and muscles, but otherwise... no-one has said yet that there is anything specific wrong with me.

I'm in mainstream education, and on the face of it, I cope okay. I use a writing slope and wear splints, and I just get through it. I rarely complain, even in hour-long tests where I write 7 pages, or the lessons where I can barely move for the pain in my shoulders and back.

Nobody really knew anything was wrong until I started wearing splints, when suddenly all I ever got asked was "what have you done to your wrists?" with that sense of intrigue, the tone of the impending "get well soon". Their faces drop when I respond; sometimes sarcastically if I'm tired, seriously if I'm not. Their faces drop because they realise they can't say "get well soon".

Because there is nothing for me to get well soon from. This isn't going to go away, and will probably get worse, if the last few months have spoken for the future. I'm beginning to accept this, generally, but every time I see the drop in the sympathy, it's yet another kick. A kick that this is my life, my future, my reality.

Some days all I can think of is the pulsing pain, the cloudiness from the fatigue. All I want is to focus on my work, put down poetic words on paper, or simply work through a set of maths questions. I thought I knew frustration as a child, but nothing is worse than being in school, appearing fine, but battling a fog in my head.

I hate not being able to focus on the whiteboard, read the passage. Some days, my pens feel so heavy, metaphorically or literally; but my ability on the face on it provides no message.

The teachers who say I'm doing fine or talk about how much I've progressed since inpatient... well, they're right. In my strength, resilience, and reduction of anxiety, I'm doing extremely well. But they don't see the headaches, my annoyed tears when their 20 minute homework takes 2 hours. They don't see the hours and hours it takes to push information for a short mid-unit test into my long term memory, because my short has become practically non-existent. Cramming is no longer an option. Several of my classmates tell me that I'll be fine, because I'm smart. Because I'm clever. They will never see my screwed-up face half way through my exam, because even with my rest breaks my wrists scream at me.

And the thing is? This is such a concentrated version of my frustrations, because I don't feel this way every day. But there's this background level, because it's hard to accept. I'm sure I will, eventually. I'll get there. For now, I just keep going.

a response to the government's decision to open more grammar schools

I was going to open this blog post saying something about simply, peacefully scrolling through my twitter feed when I saw this, until I realised that scrolling through social media is no longer relaxing. The atrocities that are Trump, Brexit and the general shambles of the world make for a lack of simple scrolling, and tonight was no different. I came across this article that told me that by 2020, there is going to be "£150m for short-term bids to create selective places within academies or expand existing grammars".

I have a lot of personal bias against grammar schools, but I'll go into that later, for there are far more important reasons why I truly believe that this is an awful idea. The overall idea of grammar schools is to take those who are intellectual in a subtly different way to others, shown by a test that is in no way similar to the KS2 curriculum; but this becomes completely redundant due to the likes of tuition.

By opening more grammar schools, you are not offering free places to an above-standard education to kids who may otherwise not achieve, because these children don't have the upbringing to want to go to one nor the money to be tutored for the test. They will not be like me, who took the test without tuition for the sake of it - because I had the motivation and valued education. Now, this is completely down to an individual, but by opening grammar schools, all you are doing is essentially opening a free private school. The people that go there have a motive, and often, it isn't by the parent.

The article says that "And under discussion is the idea that new grammars should be focused on "opportunity areas" which have been identified as having particular problems with underachievement and poor employment opportunities.". But this isn't how it would work - you cannot simultaneously focus on underachieving children while making them take a nationally selective test (the article also tells of a new national test, rather than local, as I took). They will not take the test. They will not stand up to those who can afford the tuition, or who have had that better upbringing.

That's not what the country needs, more schools that need to be tested for. What the country needs is to be putting more money into comprehensive schools that are of high quality. They need more money for SEND, particularly for access equipment and such - when I first met with my SENDCO, we were told that I couldn't really be funded; I go to a Walsall school, but I live in Birmingham, so neither sector wants to fund me. To both of them, I am not their problem. These schools need funding for the arts, for gifted and talented kids, for every single child's individual needs.

Having been to both types of school, I have found no gap in the education, only in the education styles. Personally, I don't think more schools with separate tests need to be opened purely for this purpose. My comprehensive school is supportive, targets individual needs and has high standards - but they are not the same for everyone. In my own experience, my grammar school did not look at the grades I could personally gain, and there were no sets, so we were always either lagging behind or bored because we were ahead.

There are several studies out there that say single-sex environments are bad for children, and from the amount of mental illness I have seen from grammar school students, I would agree. This is not only from personal experience but from seeing people on social media, seeing those from my old school... it's so, so common - it's damaging. This is only one article, admittedly from many years ago, but valid nonetheless.

I may be a sixteen year old girl, but I feel like I can say this with confidence: the government need to be focusing on improving the care of the majority, not the minority. Let's focus on the schools we have, make them better; make school places fair and consistent. Fund comprehensive schools that are of a lower calibre to their counterparts and build them up to what many others are, similar to my own.

Let's give every child the same access to a solid education - intelligent or not. Because every young person deserves it, whether they are going to someday be a massive part of the British economy or not, because it shouldn't matter.

Maybe I haven't quite gotten across what I'd really like to say in this post. But for now:

“One child, one teacher, one book, one pen can change the world.”  - Malala Yousafzai

Let every single one of us be that child. Give our teachers what they need to be that teacher. Give us those books, and those pens. There is a better way forward than what is proposed.

Charli.

falling in love with life again [nearly a year since inpatient]

In only 3 weeks, it'll be a year since I was discharged from the inpatient CAMHS unit I spent two and a half months in. It's been an interesting year since, with plenty of milestones and I feel stronger than I have in years. Only five days after being discharged I was on a stage for a week; a month later I was back in school part-time. A few months later I sat my year 10 mocks and did pretty well considering the 5 months I had away.

A year on, I'm doing as well as I can in school. I've become a Cub Scout leader alongside earning my Young Leader and DofE qualifications. And even more than that, I'm falling back in love with living and everything is vibrant, rather than just flat and overall, just necessary.

I don't think anyone realises how bad a place they've been in until they're through it. During the entire period; from A&E to the date I was admitted, to discharge and even really until this summer... I never really considered the fact that there was a happier, stronger person waiting at another end. I've struggled with mental illness and difficulty since I was ten and while that hasn't been eliminated, I'm stronger and happier and I think the main thing is that I'm allowing myself to be proud of this.

One of my central emotions for a long time has been guilt tying to my friend's death and general low self esteem; and this has always obstructed my allowance to be proud of myself. With my therapist (who could not be better), this has completely changed.

I missed laughs that weren't empty and smiles that weren't hollow. I missed being passionate about projects and art and writing and Scouts.

I'm starting to get on public transport again, going to restaurants and concerts. I can make plans with my friends without my heart beating automatically faster, and even when my heart does beat too fast, it isn't the one in control.

Slowly, but surely, I am becoming what I want to be. Yes, I'm still disabled and I suffer from chronic pain, fatigue, anxiety... But I'm becoming okay with that. I am going to work as hard as my difficulties will allow, get the best GCSEs I can in my circumstances, get into the sixth form. And on top of that? I am doing those things alongside some of the best people in the world, who I love with all my heart; smiling, recovering and learning to flourish.