My story – Maisie
Hi my name is Maisie and I am a 16 year old chronically-ill student who has a passion for raising awareness and educating others surrounding my chronic illnesses. I am officially diagnosed with ME/CFS, postural hypotension, severe dysautonomia and Hyper-mobile Spectrum Disorder as well as 3 structural heart conditions that I will be having surgery for in the future. I am currently waiting to see a specialist rheumatologist to confirm my diagnosis of Hyper-mobile Ehlers Danlos Syndrome, (although it is currently taking longer than we had initially hoped for). Over the past two years since my health began declining, I have had to make huge adjustments in my everyday life to accommodate being able to function somewhat normally… However I would have not been able to do this alone. On average I experience 10+ dislocations and subluxations everyday and as you can imagine this does not and didn’t stop in time for school and exams. Thankfully I have the most supportive and lovely staff at my secondary school who I have everything to thank. From sitting GCSE’s with full dislocations and going straight back to hospital after, to being carried out of prom, and even multiple ambulances being phoned throughout year 11, it has certainly not been smooth sailing! But from going from hoping to just sit maths and English GCSE to finishing 15 out of 17 exams will forever be one of my proudest achievements.
I will admit that throughout year 10 and 11 my attendance to school has not been perfect, but if the decline in my health has taught anything it would be that if you are struggling with complex health issues it is important to choose how you spend your time wisely. Initially, when I first became ill, I did not accept defeat. I would force myself into school everyday as an attempt to mask the situation which I was in; to seem as “normal” as I could in a time which was far from it. This however lead my health to decline even more as I soon realised that there is no space to improve your health and to work on strengthening your body if you don’t allow the time to do so. Throughout May, June and July of 2023 I spent more than 30 days either in hospital appointments, A and E admissions or other medical situations – throughout this I attended school as much as I could. Looking back on this now I do somewhat regret this as I did indeed end up making myself worse by pushing myself too far, but that is just me being me. Thankfully, my school were so supportive throughout this entire time and so accommodating; even they told me to slow down and not put too much stress on being in as there was little point if I was that fatigued or unwell. I did not listen! Two days before I sat my end of year 10 mocks I was diagnosed with 2 structural heart defects (which we have now been found out link to hEDS) and I was told that it would be likely that I would soon have surgery to correct them. Understandably, this rapidly demotivated me to prioritise my mocks and my mind was anywhere but trying to revise…. Looking back on this now it would have been more beneficial for my mental health to accept the offer of not sitting my mocks but at the time I feared that if I did not sit them I would be letting yet more people down. After receiving the mock results (that I did sit) a few weeks later, it felt like another kick in the teeth and that even though I was trying so hard, my life was continuing to unravel… Subjects that I had previously done well in came back with grades I was far from happy with and this caused me to spiral into a very negative state to which I spent many sleepless nights working myself up over. I feel extremely hypocritical saying this as over the past two years I have continuously risked my health in order to ‘prioritise’ school but if I can give one word of advice to my fellow chronically ill teens it would be that your health is so much more important than a list of numbers on a page and even if it takes you longer to reach your goal, that is a better option than not ever getting there.
Over the summer before year 11, I had a brief period of my symptoms regulating and feeling better than I had in months… However I started to notice that I was experiencing extremely weird things happening with my joints. Previously to this I had always been considered “double jointed” and as a child I was involved in gymnastics and trampolining and never really seemed to understand why others had to stretch in order to bend in such ways! At first, it was just the case of my jaw getting stuck out of line but this soon ramped up into multiple of my joints constantly getting stuck at weird angles which I was able to mostly correct myself. Going back to school in year 11 was a huge shock to my body which had spent the majority of the summer asleep… I found myself unable to complete multiple hours of lessons at a time (which I could do before the summer break). Consequently, I had to let go of two GCSE options in order to allow 12 free periods on my timetable to which I could rest in school and make it through a full day whenever I could. In addition to this, with the idea that heart surgery may be sooner than we realised on the horizon really took a toll on motivation to revise as I wasn’t sure if I would even be attending school in the coming months.
By November of year 11, anxiety surrounding GCSEs and sixthform applications ramped up and with my horrific experience of my summer mocks I threw myself into constant revision – this lead to awful flareups as I refused to believe that my body was different to others around me and that I thought if I worked as hard as I could then I would forget the illness was there. When it got to January mocks I was hardly coping with school, I was at the lowest I had been at that point and I dislocated joints in multiple exams… fortunately I had full access arrangements and so much support from my staff and teachers at school but despite this, once the mocks were over I entered a huge flareup which landed me with multiple hospital trips and even more growing dread for the actual exams. Health declining, attendance dropping and GCSEs approaching I began averaging at least one A and E trip a week. Not only was my fainting episodes getting worse and my heart was playing up more but my joint problems got incredibly worse. We were told by multiple doctors that hyper mobility and joint instability increases with periods of huge stress in life and with my mind and body being under the immense pressure of year 11 it was inevitable that it was getting worse closer to exams. I was at the point where I could not last in school for more than a few hours at a time, I was losing the ability to walk without my crutches. and even stand for short periods of time. Painful ankle dislocations constantly, huge heart rate increases and syncope episodes were becoming more regular by the day. I was still continuing to go into school as much as I could, but after an ambulance being called to school due to a potential heart attack I came to the realisation that if I was going to succeed in my exams I would have to work out how I was going to in a different ways to others. My mum had constant contact with the school and with them being frequently informed they were able to make adjustments to support me coming in and contact exam boards in advance etc. It was allowed that during my actual GCSEs that I would be able to take in my electrolyte drinks which was honestly a lifesaver and that if I were to dislocate during the exams that I would be allowed to leave and return if I managed to self relocate.
In the two weeks before GCSEs began I was admitted to A and E 9 times with dislocations ,that I was unable to relocate myself, and my wrists were becoming more and more problematic by the day. I was not able to move either one of my wrists outside of splints without them dislocating. Due to this it was authorised by school and the exam boards for an emergency application for a scribe during my exams (I did not end up using this though and I wrote/typed all of my exams in my splints). Every single time I was admitted to hospital or had an update from various appointments, we gathered the letters for school to send to the exam board in order to build a picture for special consideration (as you can imagine we ended up with quite a few). A week before my first exam I was transitioning between lessons in the corridor when I got knocked by another student and ended up with a severe right shoulder dislocation – after this I was thankfully allowed to be excused from lessons early to allow me to travel between lessons without being in a crowd. This was extremely hard for me as whenever I accidentally found myself unable to get out of the crowds I began having anxiety attacks as I feared others knocking me would cause more problematic dislocations so close to exams.
Once my GCSEs actually began I started to question what I actually had been so worried for. I had conquered judgemental girls in my year accusing me of faking my illnesses, I had attended school coming straight from A and E admissions, but for some reason I had built the exams up to being such a scary concept in my head that it in fact worsened my symptoms as I was so stressed. I ended up having dislocations or medical episodes in 9 out of the 15 GCSE exams I did sit, however despite this I finished every single one of the papers. In fact, I had spent the night before physics paper 1 in hospital with a shoulder dislocation, after it being successfully relocated I arrived at school the next day ready to sit my exam for it to dislocate 2 minutes before. I could not self relocate it and I was in absolute agony, however with multiple rest breaks, strong painkillers, a lot of KT tape and a sling I was thankfully able to finish the paper before going back to A and E. The two papers I however did not get to sit were history paper 2 and 3. Unfortunately, these two papers were scheduled as afternoon exams after a morning exam. I attempted to go to both these papers but I did not sit either fully in the end and forfeited them as I was not in the mental or physical state to do well. We are yet to have heard from the exam boards regarding special consideration, but we hope to soon.
If you had told me a year ago that I sat almost all of my GCSEs and made it through year 11 I would honestly would have not have believed you. It has been the most challenging two years of my life but it has shaped me as person and taught me that as long as you can say that you have done your best in your situation then that is all that matters. Yes your best may look completely different to that of your friends but that is okay because everyone leads different lives and we all get to celebrate our own personal achievements. I would not have got this far alone however and as I have said previously I owe so much to my amazing and supportive family, friends and teachers who have been nothing but supportive throughout every step of my journey!