Hello all! Today I thought I’d talk to you about the joys of trying to get an education whilst suffering with M.E. I’ll say before I start that this has only been my experience and doesn’t speak for most sufferers (as I know some people who have had relatively okay experiences). Just as a word of warning!
I suppose I should start from the beginning, although you know the history of how I became ill, I’ve never really touched on the education side of it. Though if you’ve been reading this blog for a long time I’m sure you’re aware of how important education is to me!
In early 2007 my health started to deteriorate again and an opportunity to be in the school play fell through as I was ill throughout the rehearsals. I had about five weeks off school before I returned â much to the annoyance of one of the teachers for essentially âruiningâ her plans for the production. Cough. I managed the rest of that school year before going up to Year 6 and going on the school camp. I’m pretty sure that’s what finished me off (although it was a very enjoyable experience and I’m glad I did go).
For most of early 2008 I managed to attend school and get through my SATs (spurred on by the usual threats the teachers give you of âif you’re ill you have to do it anyway!â). It was after that, however, that my health began to dwindle rapidly and soon I was having every Friday off school due to the fact I was so exhausted (much to the annoyance of a few fellow students by saying âwe all get tired on Fridays, but we don’t have them offâ). That was followed by a period of time off school, during which I was bed-bound for the majority of it. I somehow managed to gain energy to enter school for a morning or an afternoon for, I think, a week or so. I can’t really remember the specifics of that particular time, but I do remember the awkwardness of having to explain why I hadn’t been in to all my friends (who wrongly assumed the colour in my cheeks were a good sign).
My teacher had insisted that I needed to attend the step up day at the nearby secondary school (I assume in the eventuality I got better and would actually need a school to attend to). I went nonetheless and I actually wanted to stay for longer but, when I got home and spent the rest of the day in bed, I don’t think that was really possible!
After that school year ended I spent the summer holidays in bed, with occasional trips to the hospital. On the first day of secondary school I gave a letter to the deputy head of year, that mum had written, explaining that I had been very poorly and if I felt ill again she needed to be contacted so that I could be taken home. When it came to lunchtime the smell of the cafeteria made me feel incredibly unwell so I went to the nurse’s office and asked for some of my medicine in the hope that’d help. Unfortunately I didn’t get sent home like I had hoped (I assume they thought I had first day nerves) and continued on with the day until I got home and collapsed at the bottom of my stairs. The next day I had a half day and the next week I was in hospital with a relapse.
Mum researched for other places to educate me whilst I was at home so in the October (or November) I had a meeting with a place who were very helpful and offered me online lessons. I had my first lesson which, because I was doing well with it, I ended up staying for the whole hour, even though it wasn’t expected of me to do so. That resulted in me hobbling to bed to promptly pass out in my dark bedroom so I could sleep for the rest of the day.
My next experience with the same education people was in early 2009, after I had met one of my best friends (we both attended the same distance learning centre). They organised for one of the tutors to come and visit me each week and we did a mixture of English and PSHE. I had to have them come up to me in my room due to the fact I physically could not get downstairs without my legs collapsing under me. We gradually built it up to two sessions a week and by the September they had built it so that I would have 3 different tutors on 3 days (Monday, Wednesday and Friday â to give me time to do the homework and recuperate in between lessons). This involved maths, science and the English/PSHE mix.
During this time we were having regular (ish) meetings with the school team at the secondary school to see if I could gradually build up time there (maybe to see if I could have my lessons with the distance learning team in the SEN area at secondary school). They were, to put it lightly, not very helpful. With the M.E fluctuating constantly, it’s not very reliable and from that point of view I can understand, though it would’ve helped if they had been more supportive (given they said they had an older student there with M.E who they helped a lot, but we’ll ignore that, eh?).
Pretty much after those meetings I was going into school for half an hour sessions (My paediatrician and psychologist said it would be advisable for me to go in for 10 minutes at break just to get used to the idea of being in the school environment again, and I’d be able to meet up with my friends etc.. Look how that worked out âŠ) and resulted in me relapsing. I will point out that this was in November and I was surrounded by many hundreds of students, you can probably guess that I caught something.
The whole of 2010 was pretty miserable for me. I was very emotionally and physically drained after the relapse and school (and other unhelpful busybodies) were pushing me to continue on with my education (even though my baseline was at about 1 hour of high energy activity again, go figure). I continued with my original tutor who taught me PSHE/English but they soon added in someone different (to keep up with the things I was learning before. I had severe social anxiety, to the point I froze at the top of the stairs and couldn’t get downstairs for my lesson. Again, go figure) and mum, at that point, snapped a bit (a lot, *grin*).
Our family was a bit stretched as we were constantly arguing about the state of my health and the obvious need for me to keep up with my education. Mum researched home education like a mad woman and soon I was pulled out of school, with really no intention of going back. Everyone kind of had a fit at that (âshe will be isolated!â Oh now that’s when you consider how I’m feeling!) but we were approved and I obviously continued to get much better now that there wasn’t pressure for me to perform like they wanted me to, and I caught up on about 3(ish) years worth of maths in 2 years. If that doesn’t say something, I don’t know what does.
After we moved to where we are now I had the last meeting with the home-ed people as by the time they’d see me next I will have had a birthday and therefore not needed to see them. While my education hasn’t been as ⊠structured, should we say, as it had been when I was a bit younger I have been learning about how to deal with the real world and I’ve explored a lot more of my interests in depth (ones I wouldn’t even touch 4 years ago!). My health has improved so much because I’ve no longer had the stress and anxiety of needing to get everything school related done to fit in with the conformity of what people thought I needed (when really I needed everyone to sod off and leave me alone to get better!).
Last year into early this year, I felt well enough to consider going back into education, but doing something relatively easy, so as not to completely screw myself up again. I was working on my English and maths (more so my English as I struggle with it a lot more) and I attended an open day at the local college to see if it’d be even possible for me to apply to a course. They said it’d probably be a good idea to see about just doing a maths and English refresher sort of course (can you tell I remember exactly what it is?), just to see if I can cope with doing the work etc. which was very sensible. We then ended up in the photography department and it all went a bit downhill from there, to be honest!
I ummed and ahhed over whether or not to apply, but after speaking to the learning support people they essentially said to apply anyway and that we’d work from there. I ended up applying, got an interview date (my interview was probably unlike the others in terms of the majority of it was spent wondering how the hell they could be flexible enough to let me on the course â the joys of focusing on attendance rather than the education of young people) and got offered a place, which to me is a massive achievement and that’s how I’m viewing the whole thing.
We went back in a few weeks later to discuss the logistics as the head of the department (as always!) had issues with the attendance problem. He didn’t turn up at the meeting to voice his concerns, so it was a very awkward 15 minute meeting of wondering what on Earth we could feasibly do. They suggested coming in for a taster session, so I could practise getting up early and going to see how the lessons are structured. I was told not to give up hope and that something could be sorted, hopefully.
As it is now June it doesn’t particularly likely I’ll hear from them and for that I’m relieved. My health has taken quite a severe drop again and my cognitive function is not as it was before I applied to college.
What frustrates me through all of this (finally getting to my main point, only took me 1700+ words, oops), is that the only thing schools look at you for is what rating they can get for their attendance marks or their grade marks. You may be fully capable of doing the actual work, but just because you can’t get to the building in order to do lessons that accompany it, you’re not really of much use. They see you for the illness and not the person who wants desperately to do something with their time that results in them getting some sort of path to the future, when they become well enough to work in their area.
I don’t see why we should be ⊠discriminated, for lack of a better word, for something we can’t control? I have never chosen to feel the way I do and I’ve certainly never wanted it to stop me from achieving things with my education. The stupid thing out of all of these incidents is that I feel like the bad guy because I’ve made all these people fight for my education when I couldn’t and then couldn’t continue with it because of error on their part. We all have a right to learn but that proves very difficult when the education people see you as a statistic rather than a person.
If this has made any sense I would be pleasantly surprised. I’ve written this over the course of two months and both times were during brain-foggy days (because that is obviously the most sensible time to write anything opinionated!).
I shall see you all soon with another (probably equally ranty, though hopefully more inspirational) post soon!
Jess x
PS: I’ve said in a recent post that I don’t really identify with M.E but to make things simple (and because I don’t have results yet) I’ve said M.E!
Rose Vampire 