When you become chronically ill it makes it virtually impossible to attend school. I was going through a cycle from a very young age where I would be attending school for a few days and then I would become bed ridden and unable to attend for two weeks at a time. On many occasions, in both primary and secondary school my parents were called up for meetings as they refused to believe that a child could have so much illness and pain. Even now I think teachers assume that illness on such a scale only affects adults or the terminally ill. It is a worry to think how many people may be struggling with their schools, colleges and universities understanding and taking into consideration their health issues. I often look back on my school days and wonder how I ever managed to get through it. In fact, just last week my best friend said the same thing to me since gaining more knowledge on the depths of my illness.
My mum always made sure that even on my days off school whilst I was in bed, I still sat and attempted little bits of school work when I could fight through the pain or fatigue. My teachers were always shocked when I would get good results in exams from a young age from just how much time I was missing. At the time I hated it but I am very grateful that my mum made me do those little bits of work as I think I would have struggled even more than I did.
Once I got to secondary school my pain began its major flare up. I don't think I ever managed to complete a school term with more than 65% of attendance. It wouldn't surprise me if I found out I had the worst of the entire year group or even the entire school. I had the dilemma of desperately wanting to achieve good results and keep up with my class yet not being able to lift my head off the pillow or feel like I could function like a normal human being. I was slowly falling behind, loosing friendship groups and declining to socialise in or outside of school because my illness was consuming me. People would always ask me where I had been or why I was always off school.
I mentioned in a post last year, (my school physical education struggle) how my sports teacher would roll her eyes and blame my weekly doctors letters as excuses of me being lazy. It is horrific to think how many other young teens or children may be experiencing this kind of attitude during their own P.E classes. I myself was freaked out by how much pain I was having week to week, there was always something new written on the list of what was wrong with me. I do understand how it could look like an excuse but this is why there needs to be awareness in schools for such complex illnesses like my own, those students are not making it up and they are trying their very best to stand in front of you despite what they are dealing with.
The attitude that the P.E department took with me was how I want no child or teen to be treated during illness. I felt like I was being made to feel like a liar every time I handed my letter over. I could tell they didn't believe me but it made their respect towards me stoop incredibly low for reasons that were out of my control. I was always shouted out and made to carry equipment and look useful because I was seen as an excuse maker. They tried to then tell me I wasn't allowed to bring anymore 'excuse' letters in or else they would send me to the head teacher. That thought at 14 scared me to death but now knowing the ins and outs of my illness and just how badly the body is affected I would happily now say "send me to the head teacher because my body wont allow this".
I remember when I was put onto a bowel medication at 14, my doctor had to send a letter in after the school declined me to use the bathroom during lessons because it would start a domino effect in the class. Another example was when my mum would have to bandage visible joints up so I could go to school and the headmistress asked me to stop because again they said a domino effect was starting. As well as this I was often turned away from the sickness bay or nurses office and told to get on with it because they could see I had "already lost so much time off school". I always thought that teachers are responsible for the welfare and best interest of their pupils. I never felt like I could cope but on the days I did manage to attend, the attempts I had tried to ease my pain were apparently wrong of me because it was setting a 'bad trend' for others. My VALID reasons were made to seem pathetic and wrong but I now realise it was the school who were in the wrong. Even with doctors letters they chose to dismiss my health issues.
I was losing so much time from school and the lack of communication between my teachers and the attendance board was shocking. Nobody in my school thought to send me work, my mum would endlessly ring and write letters the head of my year and it took 5 months to get my first piece of work sent home. No matter how much my mum badgered them they didn't accept the fact that I was still a student who wanted to do well, I was just incredibly poorly. Children are all entitled to have a good education, just because you become unwell it shouldn't slip. My parents tried to battle the school for a solution of me not being able to attend full time but still having every intention to sit my GCSE exams, no matter what the prognosis.
A few years into secondary school (around year 9) once I had a diagnosis of bleeding stomach ulcers the school decided that instead of me missing even more days we had to find a middle ground on my attendance. They decided to cut my days down to 4 hours a day instead of 6. I managed a few weeks and thought that I had finally found a good balance until I was bed ridden as per usual not long afterwards. I stayed off school for 9 full months with pain every single day before contact was made on my pending return that September. I remember the amount of panic attacks I was experiencing at this point in my life. I had the stress of missing school but all I was focused on was being diagnosed with something that was completely ruining my life. I knew I didn't have the strength to go back in September and this worried me from the schools previous lack of understandment. Once again we were called in and I think eventually they were shocked with just how ill I looked. After much debate with the head of year and district nurse it was decided that the best thing for me going ahead in hopes of sitting my exams was to be home schooled. Although something was finally in place it all seemed to late to change what I had missed. Once this was all in place it was a measly 3 months before I was about to start my GCSE's. I had been out of the education loop for what felt like 2 years. I was so ill at this point that I struggled with my tutor and was barely managing 2 hours per week with how fatigued and worn out from pain I had become. Despite the setbacks I managed to sit my exams at home but I still think more could have been done for my right to education earlier. For the short time I had my home tutor I was incredibly thankful for their support and understanding in what I could and couldn't manage. They never blamed me and always tried to help as best they could with my studies and education.
Fatigue, organ pain, joint pain, dizziness and sickness were all major factors that I struggled with during school. Had I of had my diagnosis of Ehlers Danlos Syndrome, I often wonder would they have been more considerate towards my situation but I really don't have the answer to that. I would love to be able to return to my old school when I feel brave enough and educate them on these multi systemic chronic invisible illnesses for all of those that may be struggling to voice opinions on conditions out of their control .
Some people really enjoy the experience of school, I was never one of those people because I was constantly worried about how much pain I was in and feeling like I could just about get through the day before I crashed. Once the bell rang at 3pm I would sigh with relief that I could finally go home and go to bed yet continue to worry about how I would do it all again tomorrow. Everything about school is difficult when you are in pain, walking from building to building, stair climbing, mulitple sessions of physical education a week, factors of fatigue, homework, travelling to and from school and many more. I was already going through a diagnosis journey which was already draining for a teenager. I became so inward and depressed that I couldn't wait for my time at school to be over. It was a huge challenge and the support I was received from my school was slim to none.
There really needs to be more awareness in schools of chronic illnesses such as Ehlers Danlos Syndrome, Chronic Fatigue, M.E, POTS, Chrons, Colitis, Diabetes and others. But especially those that have no awareness. I want there to be a change in society where people can instantly know the main aspects of these horrible conditions.