Some reflections of grief, disability and Covid-19 | disability

tw // death, ableism, covid-19

As a world, we are individually and collectively struggling to process our feelings from this year, or describe them; the number of deaths almost unfathomable. Today, on International Day of Disabled People and Grief Awareness Week, I am reflecting on the different reasons I am grieving as a disabled person this year.

There is, of course, my personal grief. Back in May, I wrote an unpublished blog post, with this excerpt:

“There is something so unique about grief in this time. I don’t have any memories from my nan’s last four days of life. I don’t even remember our last conversation. My last memory of her is her being moved down the stairs by paramedics in PPE, not being able to touch her or say anything.

“We haven’t been able to hug our friends, or take time away for ourselves away from the rest of our family. We are surrounded by her things and the memories 24/7. I am having to answer question after question each night from my brother, who doesn’t understand that we can’t have all the neighbours at the funeral, that his uncle can’t come over from Canada.

“We are not alone. We are not a unique case. Tens of thousands of families across the UK, and hundreds of thousands across the world, are experiencing the same thing. For us, our grief does not directly come from COVID-19. But it is inherently linked.”

Yet there is more than that. As a collective, the disabled community is grieving thousands of those that we’ve lost, with disabled people in the UK making up around two-thirds of deaths. They are not only numbers, they are human beings who should not have been expendable just because they had “pre-existing conditions” – a phrase I have grown to despise when it is used to reassure people that it could never be them. It is intrinsically intertwined with the fear that it could be me next.

We are grieving months lost to shielding and self-isolation, watching as people around us complain about not being able to go to bars and restaurants when we feel unable to go to our local shop, or when we have been isolated like that for years regardless. We are grieving the fact that as soon as non-disabled people needed it, online learning and remote working became available overnight.

And aside from Covid-19, there is a unique grief that comes with being disabled. It is one that is so very individual, and often comes with guilt. I am proud of being disabled, there is no doubt about that. So when feelings of grief arise, I often feel ashamed for feeling that way. Though I think, on reflection, it’s natural and almost necessary.

I am allowed to be sad sometimes that I lost my teenage years to misdiagnosis, endless hospital appointments, pain and mental illness. I can grieve for the person I may have once become, whilst being grateful for and loving the person I am now. I can appreciate every step of my journey, whilst wishing that each step I walk in the world would stop causing me pain and fatigue. Those are valid feelings, and can co-exist.

Grief and disability are individual taboos, but they must be looked at in combination, too. They intertwine, for so many reasons. That is something more people should be aware of.

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.

Dear Universities | COVID-19 & education

I have sat in my desk chair for the past three days, for hours on end. I am sat in front of a journal article about the American promotion of democracy in the twentieth century, if you’re at all interested, though I’m sure you aren’t. In the space of around 10 hours, I have made my way through a page, one of 18 for this article alone. I’ve cried, I’ve snapped at my family, and primarily, been numb. I am angry at my inability to work. It is not without trying.

I am lucky to even have a desk to be sat at. Thousands of us have extenuating circumstances that are there without the presence of a worldwide crisis. We might have disabilities, mental illnesses, caring responsibilities, difficult family situations. We might have unstable wifi connections, or don’t have a laptop. We need extensions on coursework, counselling sessions, support with essays, accessible exam arrangements. Students have had their income taken away and it won’t be provided by the government due to 0 hour contracts. None of these situations have gone away with the arrival of COVID-19, and if anything they have just been elevated by us being thrust back into our family homes (or being alone in halls). We cannot be expected to work at our normal capacity during this time, and it is upsetting that we will be judged on work at this time.

Personally, I deal with autism and anxiety along with physical illnesses and dyspraxia. The lack of coordinated and efficient communication from my departments and the university as a whole has meant I have been left confused, uncertain and falling into a relapse; there has been no help for disabled and autistic students to support them in such an anxiety-provoking time. My routine, uni life and plan for the next 4 months has been swiped out from under me, and my anxiety is thriving. My fatigue has taken over, after hours of sitting up and attempting to force myself through work; my chronic pain has also gone nowhere.

I’ve also been chucked back into my family home, one that is full to the brim with 7 people including 3 younger siblings with their own combinations of conditions, and our nan, who is also extremely anxious given the situation and the fact she is only recently out of hospital herself. It’s loud, busy and messy; everyone is worried and stressed. Our wifi is struggling to cope with several of us working from home – I’ve been having to switch to 4G to use Zoom and Skype, and I only have a limited amount of that. Surely I, and thousands of other students, can’t be expected to work as normal in this capacity?

I have limited resources for my coursework – yes, there is a lot online, but history is much richer in print – and my group project is going absolutely nowhere. How are we meant to organise a group project when everyone is just attempting to survive and support themselves and their families, with their never-ending combinations of individual circumstances?

There is no comfortable format that exams can take. Take-home 24 hour exams may be significantly difficult to be taken in homes full of other people, an atmosphere full of anxiety and noise. I can’t access my exam arrangements at home; they are the only way I can properly, fairly and effectively take my exams. Adding more coursework isn’t fair to those who are better at exams, and coursework is hard enough as it is right now. This is a difficult and unprecedented situation, and I do not blame you for trying to work everything out – but I implore you to consider how difficult this is for us as students, and consult us. Please tell your students each step of the process, because it can make such a difference to those of us with autism and similar conditions.

I know you’re trying, and you might not be actively working against us. But I am tired, and I cannot carry on this way. My first year has been extremely difficult and I’ve dealt with a lot, and I have worked through it. But this is something unfathomable, something no-one can quite believe is happening. Our well-being as students needs to be taken more seriously; we cannot be expected to work as if everything is normal.

I feel lucky that I’m a first year, and I’m remembering to check the privileges I do have in this time. But it isn’t even really about the grades, for me – it is the pressure and stress about getting the work done at all, let alone getting the marks that I’ve been getting throughout the year. It is hurting me, exacerbating my symptoms and it’s beginning to affect my family.

Please consider whether uni work should be continuing at this time, and whether exams need to happen – and where they do, the form they will take and when they will take place. Consider the individual circumstances of your students and do not see us as one single body. I beg you to consult us and understand the difficulties that some of us are dealing with during this period, and that are present away from it too.

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!

A conflicting mindset, cynicism and three weeks in a city | chronic illness

I have been suffering with chronic pain as part of my chronic illness for as long as I remember – I thought it was completely normal when I was ten – but more severely since I was around 15 years old, and it’s often hard for me to see past the fact that I’ve somewhat “lost my youth” to my pain. In July of last year, I spent a week in Bath on an individual pain rehabilitation programme, and then spent a further three weeks there this January on a group programme. I have learnt to protect my heart and mind with a lack of trust and a lack of hope, so I was severely cynical, but I can truly say that it changed it all. Several people have asked me about my experiences with this service, so I thought that it might be useful to write about it in a bit more depth.

I was extremely lucky to be offered both of these programmes, with the first being a year ago this week. On my individual programme I did not open up as much as I could have meaning I got much more out of my three week programme, but it was an extremely important part of my journey. One of my biggest issues was how co-dependent I was with my mum, and the staff began to keep us apart and they took me out to quite a few different places throughout the week.

Some might say that this doesn’t sound like treatment for pain – and I would have argued the same at the time. But for me, my anxiety was so tied up with my pain because the pain stopped me from going out alone and would essentially immobilise me in a lot of situations.

In comparison, my group programme was more focused on the pain itself and my mindset, along with the anxiety and other emotions and issues that pain can cause. Chronic pain is so, so complex and although your mindset will not make it go away, it can change your perspective and how you then go on to deal with the world. That’s obviously an extremely basic version, but I think the point I want to make is that if you go on one of these programmes, you really have to trust the staff and try to let go of your overall cynicism. I know this is difficult because we protect ourselves so much when we are in this constant pain, but these programmes are built on trust and participation.

Living in Bath for 3 weeks, 2 of which were on my own, was so crucial to the changes I made during my programme. We had to go on food shops on our own, do our washing, support each other and generally just live independently, which isn’t something I’d ever done properly – challenges came up in both the independent living and the social aspects of the stay, but I learnt how to deal with and overcome these issues.

A lot of people are often intrigued by the programme I did in January, mostly because I came back not walking with the walking stick I had been using for a week and a half. They either think I was faking, or that I’ve been healed, but it’s neither of those… I had been gaining strength since my July programme but I was reluctant to come away from my walking aid without the support I then had from the staff.

A few people have asked for advice about going on programmes like this – and I think I would mainly say that an open mind is everything, both in terms of trust as I said but also in not expecting any certain outcomes. It’s made very explicitly clear from the beginning that these programmes do not get rid of chronic pain, they don’t even necessarily reduce it – for me, it reduced as I was less focused on it, but for some it might even rise slightly as you are challenging yourself and participating more in your life. If you put everything you have into these programmes, you will get something out of it, whether that be gaining your independence back completely or the first steps on a longer journey.

Thanks to BCPS (and the NHS, of course), I’m off to university in September, I finished my A Levels, and recently I’ve been to concerts, Pride, parties; I am doing more than I managed to do across several years of my youth. I am forever grateful for this – I realise I am extremely lucky to have been given this opportunity and I will never take it for granted.