I’m not shielding, but I won’t be going back to ‘normal’ yet | disability and COVID-19

On the day lockdown began, the country started waiting for it to be over – counting down but with no date to look forward to. Although this is going to be a much more gradual process than many may have anticipated, July 4th will represent a major shift and arguably the situation will no longer be able to be classed as a “lockdown”. British people will flood into pubs, restaurants and hairdressers, amongst other places.

That’s what the government have set out, and as long as they have listened to the scientists, that’s fine with me – I’m trying to not be completely cynical about the moves because it isn’t my place. But as a disabled person who isn’t technically on the clinically vulnerable list, this causes a more complex issue than you might think.

My conditions mean that my immune system is quite weak – when I had the inaugural freshers flu back in October, I was extremely ill in comparison to my peers and it took me several weeks to shake off. I don’t doubt that if I got COVID-19, it would be the same situation, or likely worse. It’s been a scary prospect since the pandemic began, because as the numbers rise, there’s a constant subconscious recognition that it could be you next.

I have to stress that because I don’t have to officially shield, I am in a privileged position over many other disabled people as I have been allowed to make my own decisions, but I think it’s interesting to look at the processes and issues behind such decision making.

I was probably less scared at the start of lockdown that I am now, which I’m sure sounds completely irrational. I would go on my short daily walks and go into a few of the local shops. Now, a couple of months on, I feel unable to even do that. But this comes down to my fear and lack of trust in the general public, and as rules relax, I am seeing the lack of care that people truly have. Seeing photos of people crushed together, whether that be on the beaches or in town, without proper distancing, is terrifying.

Of course, I could just wear a mask and do my best to distance. But being autistic, I find things covering my face extremely difficult. The government have said that having sensory issues exempts us from the law on this, but at that point you are asking me to make a decision between my conditions, between my health and my ability to cope as I navigate the world. I have to decide whether I try to cope with a mask that makes me feel like I can’t breathe, like I am overheating, distracting me from anything else, or whether I risk getting the virus instead.

For me, at the present moment, that decision does not seem worth it. I have no definitive need to go to these places that are opening at the moment, and I can’t say many of these places are ones I’ve missed in such amounts that I feel the need to rush to them. On reflection, I think part of that comes with the periods of isolation I’ve had throughout my teenage years – I already know what it’s like to not be able to go anywhere, so it hasn’t been as much of a challenge.

Watching many people go back to normal living outside of the new guidance, not just going to these newly opened places but having parties in their back gardens with more than the allowed amount of people, could not be more frustrating. Those shielding or taking distancing extremely seriously due to their health just can’t do this and it feels like it has become a pointless exercise. But if we were to get the virus and pass away, we would just be another person “with existing conditions”, absolving everyone of guilt. I recently spoke a bit more about this ableist language in an article in Foreign Policy magazine.

It’s down to the individual as to whether they stick to guidance or not. But part of the issue is not truly about the guidance – it tells you to go shopping, to go out and spend your money and go back to normal. The issue comes when thousands of people are doing this at once. We can’t prevent that, we can’t change that and it’s very much becoming an every man for themselves situation. But disabled people with no carers will have no choice but to navigate the outside world eventually, and it’s not a simple issue to make such a choice. Little provision has been made for this issue, and it’s unlikely that it will be looked at.

This isn’t me saying that people shouldn’t go out, or that they shouldn’t enjoy being able to go back to some sense of normality. But, it has to be recognised that for so many people, there is anxiety about going back to normal, and for those who are shielding properly this is even more important to recognise than it is for those having an experience like mine. Disabled people and those who have been constantly labelled as “clinically vulnerable” throughout the last few months need to have their experiences known and validated during the pandemic, and after it.

Why my ‘labels’ matter to me & HSD Awareness Month | chronic illness

During HSD/EDS Awareness Month this year, I’ve been reflecting a lot on my story and my diagnosis. It’s been a decade this year since we realised that something was wrong, but it’s only been three since I was diagnosed with Hypermobility Spectrum Disorder.

I spent seven years being sent from department to department, every doctor or therapist telling me they couldn’t do anything, or couldn’t do anymore. Several neurologists, orthopaedic surgeons, a rheumatologist who said EDS didn’t exist and young people didn’t get fibromyalgia. Physiotherapists and occupational therapists, some good, some who only saw me once because they didn’t understand me. A set of nerve tests, plenty of ECGs, lots of blood tests. I started using a mobility aid because my legs couldn’t hold me up.

Eventually I was lucky enough to see a rheumatologist who said it was almost certainly HSD or EDS, and sent me to one of the only specialists in the country for it – 2 hours away in London. I was diagnosed when I saw her, given the first painkiller that ever helped me, and referred to the pain services in Bath (also 2 hours away) who really helped me get to a point where I could cope much better in everyday life.

A lot of people think that labels are a bad thing, but each time I’ve gained one I’ve felt a bigger weight off my shoulders. There is nothing quite like spending years being shunted between doctors who don’t know what’s wrong with you and eventually getting an answer.

I suffer daily from chronic pain, chronic fatigue, easy bruising and injury, gastro issues and more, and often deal with subluxations that I wear braces to prevent. I also have Postural Orthostatic Tachycardia Syndrome, which is a common comorbidity that causes autonomic dysfunction, so I am constantly dizzy and my blood pressure drops when I go from sitting to standing (this was diagnosed much later). My joints are so lax that only my muscles properly hold me up – my lack of activity in my teenage years due to chronic pain meant that before my pain rehabilitation, my legs collapsed constantly under me leading to me needing a mobility aid and now this still happens when I’m having bad patches.

Because of how significantly this all affects my life, my label matters to me. It took seven years of uncertainty and hospital visits and pain and anger to gain it, and it meant to so much to me to be believed and for someone to say that I was valid, and not only that but was able to give me some support. One thing that I find really interesting looking back is that at the time I believed that I didn’t deserve as much help because I was diagnosed with HSD rather than Hypermobile Ehlers-Danlos Syndrome (hEDS), as I was one point off diagnosis for the latter. I’ve since learnt a lot about the conditions and the fact that there is no inherent difference in their severity, but at the time I had some resistance towards this.

I still grieve for the years I’ve lost to my chronic illnesses, and especially those when I was so lost and sad and confused. But I am so grateful for the care that I’ve had in the last few years, and for the doctors and physios and occupational therapists that I’ve worked with. I’m grateful for my other diagnoses, those I gained both before and after this one, and I am constantly aware of how lucky and privileged I am to have seen a doctor that believed me because so many chronically ill people don’t get that. Yes, it took seven years for me to be diagnosed, and it’s almost certain that part of why I deteriorated so badly was because of this, but I am lucky. That shouldn’t be the case, but it is.

And that’s why my ‘label’ means so much to me. It’s not my entire being or personality, but it’s a huge part of my life, and I think it’s okay that it’s important to me.

HSD/EDS Awareness Month is about to end, but my condition affects me for the other 11 months of the year too, and so many others. For some, it is a huge part of them and for others, it isn’t – and both ways are valid.

The impact of a late autism diagnosis, and some reflections | disability

I was diagnosed with autism when I was 15, after a few months of the question mark being over my head.

The first time it was bought up was by an orthopaedic surgeon who asked if I had Aspergers as I walk on my toes and was about to start seeing CAMHS; before him, it had never been questioned or considered. My mum and I were stunned, and were upset for weeks. Looking back, I know that we shouldn’t have been – but it was just so shocking at the time. By the time we met my psychologist not long after and he brought it up, we were no longer surprised. But that didn’t mean we’d quite accepted it yet, it didn’t mean the process was without difficulty.

The issue of girls going undiagnosed is well documented. Many are diagnosed much later than me, too, but many boys are diagnosed a decade before I was. There are some that would argue that it’s a simple cause and effect that less girls are autistic, but with the amount of girls diagnosed so late on in life, it is becoming more commonly recognised that this is likely untrue. Regardless of the sex ratio of how many people have it, it can be seen that boys are almost always diagnosed earlier than girls. The impact that can have on individuals, on families, is huge.

I had my ADOS (Autism Diagnostic Observation Schedule) during my time in inpatient CAMHS care. I spent over six hours on my own in my room that day, the anxiety and overwhelm and shame refusing to subside. I’m not sure I will ever forget that day, and how much my heart ached. Due to my anxiety causing me to refuse to partake in most of the assessment, I had to later have a 3DI (Developmental, Dimensional and Diagnostic Interview) in order to confirm my diagnosis.

It is difficult to describe the shame I felt for being autistic for the first year or two. I didn’t understand how I should feel. When I learnt I might be autistic, a lot of things suddenly fell into place. I understood why I am the way I am, why I feel certain ways, why I can’t cope with certain things. But internalised ableism is very, very real. “Autistic” was used as an insult and a joke amongst my year group at school. I didn’t tell anyone but my very closest friends, even once I reached sixth form and my year group was a fraction of the size and I had accepted it myself. I could never have imagined at the time putting anything about my ASD on social media, even though I was already a disability activist for my other conditions, in case it were to be found.

My mum also found it quite difficult to accept – it wasn’t that she was ashamed of me, or that she didn’t support me at all, it was just such a strange concept that after 15 years of knowing me, there was suddenly a label attached to me, a label that meant I was different but in quite a specific way. We had a lot of conversations in that first year, some teary, some productive and analytical. I am so appreciative for the place we have reached now, and for every bit of support she has given me.

I was extremely lucky that my school were very supportive from the moment the diagnosis was in question, and I’m very aware that most young autistic women do not get this experience. My teachers, particularly at A Level, were incredible and constantly made sure they were doing things correctly. Even though I was hiding my autism from my peers, in Year 12 I gave a presentation during a CPD training session to the entire staff body (I hope I get to do more of these in the future), all the while attempting to make sure no-one found out. Sometimes I wonder if anyone knew and helped me keep it quiet.

I spend a lot of time wondering what it would have been like to have been unashamedly myself for those four years at school. I let my proper personality shine through much more during sixth form, but I still couldn’t just be – I spent so much time hoping I wasn’t being too much, taking up too much space, being too ‘weird’.

When I started at university this year, I promised myself I wouldn’t let myself hide it. Don’t get me wrong, I was still a bit guarded, but I never tried to hide it and most people knew pretty quickly. I’m enjoying being myself without apologies, and finally getting to do all the autism advocacy that I always wanted to do.

I love being autistic. Maybe not always, maybe not every day. It causes meltdowns and sensory overload and anxiety. It causes fights with my family when I can’t explain myself. It causes me to spend hours and hours worrying about social norms, whether I’ve done something wrong or embarrassed myself.

But it gives me my passion for social justice and equality and for a better world. It means I spend hours researching a topic I saw in a tweet, or something my old chemistry teacher would mention offhand. It gives me my creativity and my innovation, the perspectives that not everyone has. It gives me my sense of empathy, the one that many people don’t believe we have.

I wish I had been diagnosed earlier. I wish I hadn’t have had to go through the panic attacks and anxiety that meant it finally got picked up. I wish that I never felt ashamed. But I can’t change that part. What I can do instead, is now shout about it. Show the positives and the negatives and the things that need to change. And, overall, I’m grateful I managed to get my diagnosis at all, because so many still can’t or don’t.

Don’t leave autistic people behind in the COVID-19 conversations | disability

Today is World Autism Awareness Day, or Autism Acceptance Day as many of us would prefer it to be – most people are aware in some capacity that autism exists. But actually, in the current global situation, awareness is needed in a slightly different sense to the everyday, with discussions about coronavirus dominating and the care and support of autistic people being almost ignored, as well as how the virus is affecting us.

One of the more commonly recognised traits of many autistic people is the need for a routine, for life to be in a set way, for there to be no unexpected changes. This is something that very clearly has been torn apart by COVID-19; schools and universities have been called off likely until September, thousands of people are being laid off or furloughed, we’re stuck at home and unable to do the everyday things we normally would. Of course, that’s the same for everyone, but the impact that can have on autistic people’s mental health is so significant – it can cause meltdowns and anxiety, and the uncertainty of when it might go back to normal doesn’t help.

Something that I’ve seen discussed by a few friends that is affecting both me and my brother is the issue of panic buying, because we can’t access our safe foods. Many autistic people have a limited diet in general, or have foods that are the only ones they can eat when stressed or dealing with sensory overload. But with people buying so much that they don’t need, we can’t access them. In my house, between the two of us these include cheese toasties and tomato pasta – all the ingredients for these, of course, being some of the main things that aren’t now readily available. This issue may also be separate to panic buying, it may be that only specific brands are okay and we can’t currently get to the range of shops we might otherwise.

Government communications needs to be clearer. Vague communication and the use of soft language like “should” and “could” can be confusing for autistic people, particularly young people. Knowing clear cut rules about what can and can’t be done during this period is necessary to make sure autistic people feel safe and understand the consequences and ramifications of not only their actions but others.

As someone who has spent long periods of their life isolated due to chronic illness, as well as spent time in a mental health unit, I feel that I’m more used to this sort of situation – but that doesn’t make it easy. Autistic people are more likely to be isolated as it is, and are less likely to be able to connect to the rest of the world during this period.

The Emergency Coronavirus Bill truly threatens autistic people in multiple senses, one of them being that local authorities can be relieved of their duties and only meet the most “urgent” care needs, and this will leave so many autistic people and their families crucial care that supports them to survive. Autism does not go away during a global crisis, and although it must be recognised that the situation means that some care may be less frequent or intense, it is not okay that autistic people’s care can be completely withdrawn or their services closed.

Similarly, the Emergency Bill means that only one doctor is needed in order to section someone under the Mental Health Act. This is a significant issue in that vulnerable people are more likely to be detained unnecessarily. This applies to anyone suffering with mental illness, but it has been found to have a profound effect on autistic people with data currently showing major delays in autistic people being discharged from units, increased used of restrictive interventions (3535 in a month) and over 2000 people with a learning disability/autism in inpatient units (Source).

This bill threatens autistic people in multiple ways, and it can’t be seen as acceptable. Social care needs emergency funding now, and the alteration to the MHA is dangerous. Please don’t leave autistic people behind during your conversations about coronavirus in not only healthcare and social care, but also how you talk about the virus and the lockdown. Think about how much you’re buying, support families who you know are supporting autistic people. This World Autism Awareness (and Acceptance) Day, don’t just retweet facts about us – use it to show that you understand and support us, especially through this virus.

How things need to change in the next decade – #LetterTo2030 | social action | #iwill

No matter your political opinion, it has to be recognised that some things need to change within the next 10 years for young people in more ways than one. With the beginning of the decade, this month, the #iwill Campaign are asking us Ambassadors and Champions to share what is important to us. I want particular change within health, equality and education – but what needs to happen?

  • Proper mental health funding

Mental health has become a buzzword for the government, yet it still isn’t being properly funded. It’s months before you can be seen and once you are, the chances are you’ll only get a 6 week course of CBT. When I entered the mental health services in 2015, things were a lot better than they are now and it’s sad to have watched things deteriorate instead of get better at a time where there is far more awareness than there was then.

CAMHS needs funding far more, so that mental health is better in young people and teenagers, and to also support this, there should be a trained mental health nurse in schools. Adult services also need to be better, and it shouldn’t be so hard to get a referral. There also needs to be better communication between mental health services and A&E, and better support when you go to A&E with a mental health issue as currently they struggle to know what to do even though we are often told to go there if we have an issue out of hours.

There needs to be change within inpatient mental health units. They currently cause trauma to many patients within their services. They also need better funding, and deserve more support and better facilities. Many of us want to continue our education during our time in the units and the teachers are so passionate, but there’s only so much equipment and they can’t know everything about every subject that each individual studies.

  • Parity of all illnesses – chronic, acute, mental and physical

Everyone says “mental health should be seen as just as important as physical health” which is absolutely true, but chronic physical health issues are not treated equally to acute physical health issues (like a broken leg, which is often the example used) which is continually ignored when parity of esteem is discussed, and the term was used liberally by several political parties during December’s General Election.

It took me 7 years to be diagnosed with HSD after seeing more than 20 doctors and physios, and I had to travel to London for several of these appointments. This is because symptoms are overlooked or disbelieved. What I want to see is parity of acute and chronic illnesses both physical and mental – a broken leg wouldn’t be ignored and neither should depression… But similarly, neither should chronic pain. There also isn’t parity between more commonly discussed mental illnesses and more stigmatised ones such as BPD, which is also hugely important.

  • Accessibility for all (and even more awareness)

Accessibility is beginning to come a long way, but it’s far from the end of the road – there still needs to be more provision made for invisible disabilities, including chronic illnesses and autism. There needs to be better support in schools, including more funding for SEND support. There needs to be a better benefits system, that doesn’t say people are fit for work when they clearly aren’t. There needs to be less discrimination over who can access blue badges or bus passes (because even though the rules have changed on blue badges, people are still being refused them). Disabled people deserve better.

Ableism is still very active in society too, and it’s often looked over in discussions of discrimination. More awareness of different types of disability is needed, even though the message that not all disabilities are visible is spreading, and there needs to be more awareness that disabled young people exist! Using mobility aids, using disabled toilets and asking for help as a young person can be extremely intimidating.

  • The opportunity for everyone to get as much of an education as they want

There are so many reasons that young people don’t get an education to the extent they would like, and that could be just their basic secondary education or a university education. It might be because they live someone that education isn’t a given right and they can’t access it; because are a young carer; because they can’t afford it or have to get a job, or because an education isn’t accessible to their disabilities, and this shouldn’t be seen as acceptable regardless of a child’s circumstances. Education should be a universal, accessible right.

  • Climate change has to be stopped… or the rest becomes pointless.

It seems like the most obvious thing that needs to be changed in the next 10 years, but it has to be said – if the government don’t start taking climate change seriously, 2030 might be a dream in itself.

I’ve got big hopes for the next ten years, and I hope that these things aren’t just lofty dreams. Using the hashtag #LetterTo2030, tell me what you think needs to change in the next decade- because young people can help change the world, and we don’t have to wait until we’re old enough to be in power to do it.

Why medication is not the enemy | mental health / chronic illness

Disclaimer: as said towards the end of this post, I am not advocating for the use of medications, I am only discussing my personal experience and the stigmatisation of such medications.

A couple of days ago an opinion column was posted in the LA times, discussing one man’s experience with attempting to come off anti-depressants. As a community, many people have written threads on the issues there are within the piece such as this one by @coffeespoonie including his use of addiction and dependence as interchangeable terms, as well as implying that an anti-depressant is not a prescription drug. Whilst these threads have taken apart the piece very effectively and better than I ever could, I wanted to talk about my own experience of long-term medication use, why it isn’t the enemy, and how much it annoys me that medication are continually demonised in traditional media.

I’ve been on some form of mental health medication since I was fifteen. Originally, for six months beforehand, my GP placed me on a beta blocker as a measure until I could see a psychiatrist, who put me on my first of many tries at an SSRI. I was very unlucky and had a major reaction to it, but it does come down to being unlucky – what happened to me would never happen to more than a couple of people. When I then went into inpatient care a month later, I was instead placed on another form of anxiety medication and, although I’ve tried several others over the last four years, it is the one I am still on today. I couldn’t imagine life without it.

Actually, that’s a lie, because I know what my life is like without it, where there have been periods off it, as well as my life beforehand. I was in Year 9 at a grammar school when I started having panic attacks and they quickly became daily, and often twice daily, occurrences which meant I was out of lesson after lesson and often unable to even make it through the gates. I moved school, and though my anxiety was reduced they were still happening. Fast forward two years of therapy, I attempted to come away from my medication, and it just wasn’t sustainable – my brain moves at a pace that I often can’t even explain; I have five trains of thought running at once, most of which aren’t even relevant and causing unnecessary levels of panic, at such a fast speed I can’t focus on them.

I’m at the best I have been for four years at the moment; those two years of therapy had a huge impact, and in the last year I have had my chronic pain management programmes which were quite holistic and focused a lot on my anxiety. Apart from during exam season, my panic attacks have been increasingly rare. But with my move to university, I don’t know how I am going to be. Often, doctors question me as to when I’m going to come off the medication as if it’s simply for an acute illness. Mental health medication is often seen as the last resort, something avoided if at all possible, and whilst I am a big advocate for therapy, I don’t think it should be demonised the way it is. Therapy got me out of crisis, but my medication is what keeps me afloat. If anything, it was my medication which meant I could get the most out of therapy.

In a similar vein, I’m also on a long-term painkiller, which are equally as demonised in the time of the opiod crisis. It began with 6-8 tablets of paracetamol a day, before endless different painkillers that were all completely ineffective or gave me side effects. Eventually, I found an NSAID that seemed to at least take the edge off the pain and I was on that until I finally saw a specialist rheumatologist who recommended the one I have been on for the last two years. I could probably survive without it – but could I live? Could I have done my A Levels? Almost absolutely not.

I am not advocating that people turn to medication before therapy, whether that be talking therapy or DBT or physio, or even advocating it’s use at all. I’m not a doctor, and I will never recommend a certain medication or slander those which have caused me issues, because everyone is different. All I want is for it to stop being so stigmatised, particularly by people who have never experienced the trauma and issues that mental health problems and chronic pain can cause.

Am I dependent? Or even an addict, as David Lazarus implies in the LA Times? Perhaps I am dependent. But I am no longer constantly frozen by anxiety and out of action due to pain and panic attacks. Is that such a bad thing? Those who say that my age means I should not be depending on medication are correct, because no I shouldn’t have to be – I don’t want to be either, but I have chronic and mental illnesses.

And yes, there is significant irony in the fact that I have been sat writing this piece for two hours and have only just realised that I didn’t take my meds this morning, but here we are. Let this be your reminder!

How to survive your A Levels… with a long-term health condition | disability and education

This is a part two to my previous blog post of tips about how to survive your A Levels, more specifically about surviving them with a long-term illness. Disclaimer: this is all from my own personal experience and I can’t claim that any of these tips will definitely work for you. For context, my main issues/symptoms include chronic pain, chronic fatigue/”brain fog”, sensory issues, co-ordination issues, anxiety and concentration and memory issues. I’m also aware of things that I was privileged to have at my school because it was a good school, as well as being able to afford a laptop, though I’ve tried to recognise that throughout.

Tell your school!!

Some of you reading might think this is a given or you might have little choice in the matter, but for others, this isn’t something that comes naturally particularly if you have something that is invisible and/or misunderstood. I honestly think that this is so important – so your teachers know how to support you (and potentially cut you some slack every now and then!) and so your school don’t take issue (or less issue) with you for taking any time off you need, whether it be to rest at home or for appointments, as well as getting any separate exam arrangements (I had a separate room, used a laptop in extended writing subjects, had rest breaks and had my exams on yellow paper).

I’ve always been very vocal with my teachers, but I know others prefer to go through the disability or pastoral team, and that’s fine too! The problem comes when no-one knows. If your school have issues with what you’re telling them, take in as many letters as you have (if you’re currently undiagnosed and/or awaiting specialist appointments, I’d recommend getting your GP to write you something, which I used to have to do).

Get your textbooks in a format that suits you, and/or make them suit you

For me, this was two-fold. My chronic pain meant that I couldn’t really carry textbooks, so in Year 12 I had my philosophy textbook on my laptop but borrowed one if there was one available (as I do struggle to read off a computer for that amount of text), and in Year 13 always borrowed one as there were a few more in the room. I did carry my history textbooks as they were much less heavy, but in Year 13 when I had both topics on the same day, I got a second copy of one of them through my school’s bursary to keep in the room (if your sixth form doesn’t have a general bursary, ask the disability team – you should be given one). If you have one, getting the Kindle version on an iPad/tablet might be a good alternative, or even on your phone.

The second part was making sure the textbooks worked for me. This meant highlighting in my history ones a LOT and scribbling in them, and in all of them, putting in a lot of post-its indicating topics/chapters/different types of information, and using a yellow overlay.

If you have a hospital admission…

I had two hospital admissions during my A Levels, although they were both planned and not at the conventional type of hospital – I had two inpatient pain management programmes. The first was at the end of Year 12 so it didn’t matter as much, but the second was in January of Year 13 so, a pretty big time of year. I co-ordinated my schoolwork through the pastoral Sixth Form team – two absolute gems – who emailed my teachers and had them send me powerpoints, worksheets, exam questions and anything else I needed. It was decided there was no pressure for me to get through any of it, but I would have it if I could, and then it’d already be there for when I got back. I personally think this is a good way to do it – everything is in one place and all teachers are aware of the situation.

It does make life a bit difficult, and I do think it might have affected my grades a little bit, but it’s not something you can change nor is it your fault. If you have an admission, it’s easier said than done, but try not to think about it too much – worrying won’t do anything and will likely make your recovery more difficult. Do some school work where you can – I only managed to do a little bit of my EPQ and a couple of lesson powerpoints – but don’t let it harm your recovery.

Managing therapies/medication alongside your studies

I had a lot of physio to be doing when I came out of my pain programme in January, and I found it really hard to keep up with it when I felt like I should be studying all the time. The way I eventually managed it was by slotting it into a certain time – for a while this was straight after school, as I often didn’t work straight away anyway, and later I used it as a study break. Experiment in the first few weeks with this and find what makes you the least tired and works best. I also ended up dropping down to only every 3 or so days during exams. If you have talking therapy or physio appointments which are more regular than other hospital appointments, I would recommend you trying to get them at the start or end of the school day (I used to miss form and PSHE quite often as that gave enough time to not miss a lesson) or during a free so you’re less likely to miss something. It’s not always possible, but every little helps.

In terms of medication, I used to have a midday dose of one of my painkillers so it would be in the school day. I ended up finding a rhythm where I would have it at lunch which just meant I had to shift my evening dose slightly. Set reminders or even alarms on your phone to make sure you take it – if you’re going to take it at lunch you could even put a note in your lunchbox, whatever works.

Learn how you catch up and revise best (How do you learn?)

Everyone has heard of the “different learning styles” of visual, audio and kinaesthetic, and that’s a good place to start – can you catch up by reading the textbook, or watching a youtube video, or from the powerpoint your class did? Or do you need the teacher to teach it to you? This can also partly come down to the subject, your ability and the teacher – do they put everything on the powerpoint or do they talk in more depth? And do you feel confident in your ability or need to ask a lot of questions? For me, I would generally catch up with history or philosophy by myself with the materials, but I couldn’t cope on my own with chemistry both due to my ability, my need to understand everything in depth and my endless questions, so I would have after-school sessions.

In terms of revision, it’s probably going to be trial and error for at least your first term, if not all of year 12. Don’t be worried if you revise for a test and it all goes wrong – that’s partly what year 12 is for, and to be honest, that happens for nearly everyone, illness or not. But it might be that everyone uses mindmaps, and you prefer simple sets of notes, or recording yourself speaking them.

If you like flashcards, or want to give them a go, I highly recommend Anki – you type the flashcards however you want (so you could do question and answer, or subtitle on one side and the content on another) and then when you revise it, you rate how you found the card, and it will use it’s algorithm to decide when you should next review each one. It also has a text to speech function, so you can have it read back to you if you prefer. It’s free on PC, but it costs a bit for you to get it on your phone.

I also recommend websites like GetRevising and TES, which have thousands of resources ready to go. I wouldn’t recommend never making your own resources, but if you’re having a bad time of it with your illnesses it can be really helpful, or if you fancy giving another type of resource a go. TES and Prezi are highly likely to have powerpoints for most topics, if you want a bit of an alternative from your teacher’s or if you haven’t got one.


Every long-term illness/condition and every person’s symptoms with each of them is different, so it’s impossible to generalise, but I hope these tips are somewhat helpful, and I wish you all so much luck for your A Levels! You’ve got this.

How to survive your A Levels, by a disabled student | disability and education

As of a few weeks ago, I can officially say that I finished my A Levels but it was definitely not without struggle. Throughout my two years I’ve been dealing with my hypermobility spectrum disorder and chronic pain/fatigue, as well as several mental illness/learning difficulties, and with this came absences for countless medical appointments and I spent chunks of time away on 2 pain programmes. Nonetheless, I made it! So, here is my slightly cynical advice on how to survive your A Levels, whether you have a disability or not.

Take the right subjects for you

This one doesn’t help if you’re going into year 13, but for new year 12s, this step is the starting block that will honestly set up your two years – there’s a fine balance to strike at A Level between taking subjects you like and the ones you’ll do well in. If those go hand in hand, great! But if they don’t, you need to be very prepared to work extremely hard if you’re not as naturally inclined towards a subject. I took chemistry, which I love – even if I complained about it all the time and wouldn’t admit it to my teacher – but I had to accept early on that I wasn’t going to walk away with an A* and I probably worked twice as hard for it as my other two for a much lesser reward.

Get a good planner and always be prepared for setbacks

Regardless of if you’re a disabled student or not, A Levels will provide challenge after challenge. There’s coursework you think you’re done with that comes back, there’s random tests you get two days to revise for, essays due when you have mocks, I could go on. The best way I can tell you to manage it is to get a good planner – I recommend a Personal Planner (not spon, they’re just great as you personalise every element) but definitely get something with a good amount of space for each day. Plan what you’ll do in your frees, give yourself mini deadlines, plan your evenings, and plan when you will rest, which I will controversially say is possibly the most important.

If you then have to schedule in your medical appointments or a hospital stay, it becomes much easier to look at your week and work out when you will catch up. Personally I liked to schedule in after-school sessions with teachers because I prefer to have concepts explained to me when I first learn them, but you can also just work from your textbooks.

I honestly had 2 planners and 3 to-do lists going at any one time to manage things – you really don’t need to go that far but try and find what works for you early on!

Build rapport with your teachers

I definitely recommend that you get to know your teachers and let them know how they can help you. After the first lesson I had with every new teacher during my GCSEs and A Levels, I would stay behind and give them a quick run-down of my conditions and my needs even though they were emailed about me – it puts a face to a name . If you’re not a disabled student, still have a chat with them at some point and just show interest and let them get to know your learning style; it just doesn’t necessarily need to be so urgent.

My teachers have probably breathed sighs of relief now that I’ve finished because I spent a lot of time with most of them, after-school or by email or bothering them in their frees. I would not have wanted to be one of my teachers, put it that way, but I think they mostly got used to it after three years of me tipping up in their classrooms often in tears. I don’t think I would have gotten through my A Levels without a few of my teachers and the sixth form team, so I’d honestly recommend that even if you’re not fussed about knowing your teachers well, you still go to them if you find yourself needing some help, academically or otherwise.

Take as many opportunities as possible in Year 12

Most sixth forms (and I imagine colleges as well) offer a lot of opportunities to their students to help you with your upcoming UCAS/apprenticeship applications, and a lot of universities offer stuff too. I did 2 summer schools at Durham and Bath, as well as going to a seminar on Brexit, me and my best friend went to Manchester for another EU based event, our school took us to Bristol which included a taster lecture, I was a progress mentor and the leader of the mental health advocate team, I did a Cambridge essay competition, and there was plenty of stuff that I didn’t take part in too. Do as much as you can (without sacrificing your work or health) and I guarantee it will help you find your passion and confirm what you want to do at uni, as well as supporting your application in Year 13.

I also did an EPQ, though at my school we did it in Year 13 unlike most, which I would highly recommend if you have a topic you’d like to research more in depth that you won’t be able to in your subjects. It’s a lot of work but if you love your topic it’s so worth it. I really enjoyed researching it, writing it, being slightly (very) argumentative about my points with my supervisor and presenting it at the end. It’s funny how much confidence I gained from having to do a 10 minute presentation about the pill in front of a room 90% made up of men, but here we are.

Remember that you know yourself and your body best

This is slightly controversial, and I’m not sure schools will like this particular tip, but if you can sit there and say you know that a day off will benefit you, take one. I’m not saying take one every week because you feel like it, but if you’re at breaking point, just do it. For me, that was sometimes the difference between getting through to the end of term vs me suffering burn-out and being off for days on end later on. You might not need a day off, but maybe you might need a free period of just relaxing with your friends instead of working hard, and that’s okay too – as long as it’s rare, and because you actually need it.

Just stay out of drama

It isn’t worth it. I promise. Shove in some earphones if it’s around you, block them if it’s about you, get your work done and move on.

…But keep a social life!

I didn’t really have a social life in year 12 between my disabilities and my work, and although I couldn’t really have prevented that, I do wish it had been different. I adore my group of friends and I’ve been very lucky to have them, but I wish I’d spent more time with them. Let yourself have time off every now and then, I promise you won’t drop by 2 grades for every hour you’re out.

On a slightly different note, but it fits here – I’d really recommend picking up some volunteering. I’ve been a Cub Scout leader for 3 years now and not only have I gained skills and qualifications from it, but I’ve gained a family who I absolutely adore. I also did an hour a week in one of the GCSE Science classes through all of sixth form, which… well, it built my resilience, we’ll put it that way.

Don’t let anyone tell you how to note-take or revise

I typed all my history and philosophy notes in both years because of the pain in my hands, but to be honest I think I would have regardless because there’s so much information to get down! But in the bigger picture, I only ever took notes that I thought necessary and I put them informally if I needed to even if it caused confusion during folder checks. Whether you’re a disabled student or not, just get in the habit of working how you need to – you know yourself best. When we were really close to exams, one of my teachers kept telling me I needed to be exclusively doing essay plans, but I knew I needed to drill the content more – so that’s what I did, and it worked.

Don’t procrastinate on your coursework

NOTHING makes me wince more looking back at my A Levels more than my history coursework. I absolutely hated it, to the point that I think my chemistry teachers heard more about that than me moaning about their subject for a few months. But, I really wish I’d just got on with more of it over the year 12 summer and the first couple of months of the year. I came out with a high grade in it in the end, but it was such a slog and it took up time I needed for other things.

________

To be honest, I could probably continue for quite a while with this, but I think those are are the main things – and that’s probably enough sarcasm for one post. I hope that was vaguely useful (or entertaining), and I wish you so much luck for your A Levels!

Could I do more than my best? (post results ramblings) | education

I’ve already written this post once, the day after results day. It was raw and angry and harsh, and a lot of it wasn’t me talking, it was anxiety and annoyance at an education system that I fought against for two years for what felt like nothing. It’s a complex thing, but I feel more at home with myself again now I’ve had time to process it.

Two years ago, I opened an envelope that I genuinely believed was the end of the world. It wasn’t, but I was over the moon. This year, I knew it wasn’t the end of the world – I’ve worked hard to try and overcome the concept that a few letters on a page are all that I am – but I was gutted. And it’s sad, because I’m happy with three out of my four grades, but I automatically discarded those from my mind before I’d even processed them. A few days later I’m upset that I felt no need to celebrate on Thursday, because I know there is more to it than that piece of paper.

I have spent two years fighting an education system that isn’t for disabled and chronically ill youth like me. Although my school have been as supportive as possible, my body has not really been able to cope with 7-8 hour days, or my memory with the density of the subjects I chose – I honestly wish I had done my A Levels back when AS was 50%. It sounds dramatic, but I spent full days in such intense pain that I could barely see the board, and some days my fatigue was so bad I couldn’t read a sentence out of a textbook. I missed weeks off school to be in hospital, and the equivalent of several more in appointments.

I have to remember that these exams pitted me against hundreds of thousands of students, the majority of which will not have experienced these issues. The ones who did may have done better than me regardless, but this isn’t me making excuses – it’s me forgiving myself, letting myself realise that I did the most I could, and that’s okay. Being able to write for 2 hours upwards with chronic wrist, shoulder and back pain; keeping focused and not dizzy for that amount of time – I won just by getting through all my exams, and sixth form in general.

For me, I think part of the reason I felt so upset was because I knew that there would be people I’d either let down, as well as the people who would judge me. Since my GCSE results, I’d been almost put on a pedestal by some of my peers that I didn’t want to be on; shushing me if I expressed concern or anxiety about my grades. And I felt like I let down my teachers and the sixth form support team, but they (naturally) told me I was being silly. My chemistry teacher is a very matter-of-fact person, but with the most human of emotions, and that makes for someone who can talk sense into me. I couldn’t be more appreciative.

It’s cliche, but those grades truly don’t tell my whole story, just like everyone tells you before you get your grades, but you can’t see it at the time. I’ve done three hours of volunteering a week during both years, working with teenagers at school and the Cub Scouts. I did assemblies about mental health and a talk about my disabilities to the entire staff body. I never shut up about things I was passionate about, had debates in class, educated people on feminism and ableism and sexualities. I wrote essays on topics I was fascinated by.

I did three subjects I love, and I still love them, regardless of the grades. Maybe chemistry was a wildcard, and I knew it was risky – but I couldn’t imagine doing anything else. In general, I loved my sixth form experience, and the piece of paper I received on Thursday doesn’t tell you any of those other things.

Four letters at the age of 18 aren’t the end of the world. It’s time to start new adventures, and there’s already several opportunities coming my way. I did my best, and that will always be enough. And I know, that everything will be okay.

Why I (sort of) miss my walking stick | disability

In May 2017, I started using a walking stick – on the day of my GCSE biology exam to be exact, and I was so nervous about what people would say. It’s not exactly seen as normal for a 16 year old to be using a cane, is it? But I had very little choice; I couldn’t hold myself up and the amount of pain I was in wasn’t worth it compared to the slight embarrassment I felt when I first started using it.

Using a walking stick as a teenager is really difficult, and I can’t sugarcoat that. Elderly people glare at you because they think you’re faking; people make comments as you walk past. A lad imitated my legs collapsing as he walked past me once, and I’ve never felt so self-conscious. My condition that was once invisible became public property to discuss and question and laugh at. A boy from a younger year once shouted after me asking if I’d just come back from a war, which was not only humiliating, but extremely offensive to veterans.

It got easier with time. I became more comfortable with going out; it took longer for me to feel okay when I was just with my friends instead of my mum, purely from a protection perspective (although my friends are amazing, and so supportive). I got to a point where I just rolled my eyes when someone made comments, and I empowered myself through having photos taken with it.

This was taken in Swansea by my best friend Caitlin because I walked past this wall every day walking to work experience and I happened to match it.

I stopped using it in January 2019, when I had my pain rehabilitation programme and strengthened my legs. And obviously, I was, and generally am, really happy about that – people don’t look at me, they don’t comment. But that causes other issues for me, and I sometimes miss it – not in that I want to use it, but the fact it has made my disability invisible again.

If people knock me, it hurts for at least four days, and this happens a lot because I can’t walk very fast. I don’t feel like I can ask for a seat on trains like I used to, so I’ve stood up most times than not since January on shorter journeys and the tube in London. It feels like I’m constantly dismissed and seen as able-bodied, but I’m still working on building up my strength so my legs still collapse under me and I can’t walk very far in one go.

This isn’t meant to be a sob story. This is more about the differences between being invisibly disabled and having a visible invisible disability (which is different to a visible disability, which is more about visible symptoms, I believe). I know I am privileged to be able to walk around without people making such comments, I’m more likely to be given a job, and I am less likely to find that places are inaccessible to me. There is definite privilege in the stage I am now at with my disability, and it’s quite undeniable.

But I can’t deny that I sometimes miss the ease that it could sometimes bring in people accepting that there is actually something wrong with me, even if that was often grudging. Now, I feel like I have to prove myself far more, and it’s difficult in a different way.

Whether your disabilities are visible or not, there will always be a fight. Disabled people still aren’t equal in so many areas, and often aren’t even included in lists of marginalised people. So it’s interesting for me to look at the different versions of the fight that I’ve experienced, and will continue to experience.