When I became ill, I was studying for my GCSEs and was loving education. However, I soon joined the thousands of teenagers who was unable to continue with school due to the severity of my M.E. I remember clearly when I first had to stop going to school that the first thing that my grammar school did was send out a truancy officer to “check” I was actually ill. It is baffling that even at that young age, I had to prove that there was a reason I wasn’t able to attend school. The funny thing is, I loved school! The social interaction and learning were so much fun and I got a lot out of it.
After the truancy officer had been and confirmed that I was extremely unwell, I had one teacher who was particularly good at communicating to my parents and doing everything she could to support me. This is a rarity. The truancy officer had said that I needed to leave my school and go to a hospital school that has other people who are unwell and need specialist support. Despite being saddened that I would not be going back with my friends, I felt hopeful that I was going to still continue with my education. The difficulty was, it took months for the school place to be sorted out, in fact six months. In all this time I was missing out on studying and was also becoming more and more unwell. It was soul destroying.
By the time the place was sorted, I had been admitted into hospital. The teachers were trying to involve me when I was there but I couldn’t utter a word. Apparently, the reason it took so long was because they were sorting out a one to one tutor who would teach me from home. This never happened.
M.E. Is the biggest reason for declined school attendance. Yet there is barely anything put in place to help these children who are struggling. It really is a case of how the school decide to support each case.
As soon as I turned sixteen, even on the children’s ward, they stopped trying to offer me an education. They had been taking a “wait and see” or more like “when she is better” approach. In the end, I missed out completely on my education. I had a couple of GCSES that I had taken early but other than that, nothing.
When my sister was going to go to university, I felt like I was missing out. I was bed bound, room bound and house bound but I still wanted to be able to achieve like my peers. I decided to try and do a part time degree via the open university. I had no qualifications but I was desperate to be like my friends and do a university course. I have to say the support they gave was incredible. They gave me a personal tutor, equipment to enable me to study from my bed. The only problem is, I wasn’t well enough to continue with the degree after the first year. I felt like a failure because it is ingrained in society that you have to go to university.
I am now 28 years old and am no further on with my education. I have got to a point where I feel I could be trying to look at accessible employment from home, yet there is no support to make this happen. Most jobs require university degrees or at least some qualifications. Yet I don’t have any.
Through running my charity, Share a Star, I am completely aware that I am not an isolated case. In fact, most youngsters suffering with M.E., face difficulties at getting the right support to be able to continue learning.
There has been some progress, as some youngsters have managed to get a robot to help them attend classes from home and even interact. This costs a huge amount of money but would be great if it was more readily available. Until then, there are going to be more young adults who are just like me, have the ability but not the qualifications.
It saddens me that this has happened, and there isn’t more support in place for this kind of thing. It is apparent to your readers (both of the blog and your wonderful book) that you can do whatever you put your mind to, as you are extremely brave, intelligent, and determined! I have no doubt that you will achieve an education if it’s what you want! With chronic illness, we don’t always get to choose the timeline though 😉 Thank you for writing about important topics like this for the chronic illness community. You are a gift to us.
Honey, this makes for very unhappy ready because the grammar school & the system completely let you down. The severity of the ME & the rapid decline of your health took you from being a high achieving pupil to a person in locked in syndrome in a matter of 6 months. You had achieved an AS level & 3 GCSE by the age of 14 & then you were swept away by the ME monster. The education system, school & medical profession had absolutely no idea what to do & the sitting on the fence while Dad & I fought to keep you out of a locked ward in the Maudsley Hospital, meant you were let down even further. The first module in your OU degree showed everyone how much you could & should have achieved. Sadly it also showed how much you were let down too. You have never given up even when the ME monster was at its worst & I would urge you not to do so now. Let’s show what needs to be done for kids with ME & wake up the professions that should be supporting them, by increasing awareness & campaigning for research. Let’s show that you & so many others weren’t let down for nothing.
How about studying for an Open University degree? I did it. Not easy at all, but would help you head in the employment direction you would like in the future, especially when your little one is off to school. Given your circumstances even before you have finished the degree employers would probably count your individual ‘credits’/courses that make up an OU degree as being equivalent to A levels. Just a thought. x