By K W Warburton, The Reluctant Spoonie
Recently, I sat down with my husband to discuss how he recovered from his childhood M.E (Myalgic Encephalomyelitis) which had severely affected his life for 7 years. When I first met my husband, he was like every other 18-year old. We went to all the fresher’s events that week and stayed up until 2 am most nights.
He was one of the lucky ones. There was no indication of his past life with M.E. (Myalgic Encephalomyelitis). He’d ‘outgrown’ his symptoms by adulthood. Of course, this is not always the case and many people who develop M.E as a child do not simply outgrow it as most doctors seem to think happens for those with childhood-onset M.E.
For M.E awareness month (May 2020), I sat down with my husband (because what else is there to do when you’re in quarantine?) to discuss his childhood M.E and how it affected his education and social life.
K W Warburton: What age did you first start experiencing symptoms?
Dear Husband: I don’t think of it as age, but as the year of school as that is how I frame how it happened. It was year 6.
KWW: That’s the final year of Primary School, so you would have been 10.
DH: I think of it with regards to the effects on my school and social life rather than an arbitrary number.
KWW: Did it come on after a viral infection or did it occur suddenly?
DH: I don’t recall a viral infection. I just started being unable to sleep at night and feeling uncomfortable in the bed. There were a good few months where it ended up with me and my Mum sleeping downstairs on a Lilo (inflatable mattress) watching Lord of the Rings because it was more comfortable than a regular bed. It kind of got worse to the point where sitting was uncomfortable as well as standing. I got pulled out of school for six or so weeks and even had a wheelchair for a little bit.
KWW: A child-size wheelchair?
DH: No, I had a regular one with a booster seat.
KWW: How long did it take you to get diagnosed?
DH: I was diagnosed with exhaustion after everything was eliminated and then they kind of said ‘I guess you’ve got this (M.E) then’. That was that. There was no real treatment as such. I had some medicine that I took every day.
KWW: What kind of medicine?
DH: I don’t even know. I can’t remember. It was in a plunger syringe and tasted awful, but I can’t remember for the life of me what it was. It literally could have been a placebo and I wouldn’t have known. I would question why a placebo would taste so terrible, so probably not. It was literally more about accommodating my limitations to school and trying to get me in and learning.
KWW: Was it your GP or a specialist who oversaw your care?
DH: I had lots of hospital visits and lots of being passed around various specialists until the end where I got the diagnosis and they were like ‘sucks to be you’.
KWW: When did you get Tilly and how did she help you and your family through this period of time?
DH: We got Tilly that year as well. I remember them bringing Tilly to the school gates when she was just a tiny pup and everyone fussing over her because she was a tiny adorable Westie. My parents later said that Tilly was indeed got because of the studies showing that improvements in chronic conditions in children when they animals partly due to how animals can kick start an immune system partly just because they are cute and make people happy and there are increased health benefits over a long period of time.
KWW: How did you manage school during this time?
DH: At the very start of the six-week period, we did some home schooling, but we didn’t get a huge amount done. I spent most of the time just being tired and balancing being unable to pay attention after an hour or two and after a couple of weeks, just being lonely and/ or bored to death just being in the house. Going back to school, I would take a lot of work home. It was more in secondary school where I went part-time. That was more to do with eliminating the extra subjects and the optional ones such as History, Geography, French and German.
KWW: So, you just did the core subjects?
DH: Core plus D+T (Design and Technology) plus R.E (Religious Education) because we were a religious school and you couldn’t not do it.
KWW: What about P.E?
DH: Yeah, P.E (Physical Education) was another one that I didn’t have to do which led to the hilarious thing wherein one of my school reports where one on the PE teachers must have put me mentally under the category of ‘I can’t remember who this kid is’ so he gave me ‘he does okay, but could try harder’ when I was completely absent the entire time.
KWW: When did you return to school full time?
GCSEs– Exams you do in Year 11 (age 15/16) which used to be the final year of school
DH: For a period in Year 7, maybe 8. I think year 8 was when I transitioned to part-time. Definitely was part-time through GCSEs. Ended up slightly confused later on when I had less GCSE’s than a regular student because I didn’t do humanities subjects. I took extra science subject to balance it out and was like, ‘I only have ten/eleven GCSE’s’ and everyone else was like ‘so do we.’
KWW: What about A-levels?
A-Levels– exams you do at age 17/18 that are used for university entrance
AS-Levels- pre-cursor exams to A-Levels taken at age 16/17
Sixth Form- the name given to the final two years of school in the UK due to the old-style naming of school years. These two years used to be optional (school leaving age was increased to 18 in the UK in 2015) as A-levels are mainly taken by students who want to attend university. Sixth Form Colleges are usually separate from secondary schools, but some schools have their own Sixth Form.
DH: A-levels. For AS, everyone would do four subjects and drop one and the rest through to A-level. I just straight up didn’t take that extra AS-Level. I instead just chose my three core A-levels and at least then, I wasn’t part-time and was there full-time. And in Sixth Form, there was always someone with an off-period. it wasn’t seen as me being weird or ‘that part-time kid’ any more since no one track which periods they had off.
KWW: What disability adjustments were you given for exams?
DH: Everyone who has special requirements for exams were taken to a room when everyone else filtered into the main exam hall. I was given the ability to take breaks during the exam. I would put my hand up and they would take my paper away from me and I could have a break for as long as I wanted. When I came back, they would re-start my time. So, I would have the exact same time as everyone else, but I could rest if I needed to. Luckily at that time, I was more on the up, so I never took a break. I was always entitled to and was taken to that side room, but I never really took it at that point. Plus, I usually finished half an hour early on every test, so I didn’t want to take more time than necessary in the exam room.
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KWW: Do you think having childhood M.E affected your educational experience in any way?
DH: It definitely affected it a bit socially. Like I said, it was more in the middle part where I was part-time and that was seen to be weird. Kids being dickheads would point it out and try and use it against me. And trying to find a crowd and fit in would be difficult because you would never really track on to a group since I wasn’t there all the time a lot of things happened when I wasn’t there. Kind of hard to deal with.
KWW: What about school trips and stuff?
DH: I did a couple of school trips. We didn’t have a huge amount of school trips, but I did go on them. The only one that I can remember where I had some issues was the outward bound one where you go to an outdoor activity centre and you do all the activities and whatnot. The only time when I had a major issue there was when I did a full-on hike and the group was going way to fast for me and I complexly lost pace with them. One of my friends at the time did stay back with me. One of the advisers who worked for the camp came up and said ‘Hey! You’ve got to stick with your group.’ And I was like ‘I can’t, I’m literally disabled.’ And he was like ‘You can’t not stick with your group.’ And he didn’t get the fact that they’d buggered off and I couldn’t keep up. It wasn’t because I was being lazy, it was because I couldn’t. that wasn’t great. The rest of the time, it was fine. There weren’t many high exertion activities.
KWW: Do you feel like you missed out on things because of your childhood M.E?
DH: Like I say, I didn’t have the strongest social life. People did things after school and I wasn’t there to be invited. So, I missed out on a lot of that during that period of time. It wasn’t until Sixth Form until I got a more consistent friend group and was at school all of the time. But until the point that I was well enough to be seen and to be around I wasn’t out and about much, unfortunately.
Check out posts about studying with a chronic illness here