We're delighted to present another young person's story about how they are managing education alongside ME.
Sian is 15 years old and has written this for us - thank you so much Sian!
"One of the most important things I found I could do for myself, in terms of pacing at or for school, was changing my mindset. It took me a long time to finally realise this but nothing, not even school, comes before my wellbeing. Society often teaches us that good grades will lead us to a good life but is that really true? Finding a good balance between school and other aspects of your life ties into my point above too - you have so much time to achieve your GCSE or A Levels but there isn’t always as much time for the other things - growing relationships, spending time with the ones you love, new experiences. Sometimes it’s not a bad thing to prioritise this, especially with the limited energy we have. A good life isn’t about good grades and a well-paying job - it’s about finding happiness.
Another method that helps me with conserving my energy is taking breaks before pushing myself beyond my limits - don’t reach a breaking point before resting, this will make the recovery process much longer and could lead to a worse crash. I’ve put some more tips below on how I managed this in a school environment!
You could put these in place by asking SENCO for extra support and keeping in regular contact with them. What your SEN will provide for you depends on what your needs are. For example, I couldn’t manage 6 hours of school and I needed help getting from class to class. My SEN provided me with a reduced timetable (meaning I could attend for 50% of a school day instead), no homework and flexibility with assignments, rest breaks, help from a TA who could push me between classrooms and offer me support in lessons and a pass to their wheelchair lift. If you’re in a similar position to me, maybe some of these would help you!
Unfortunately we don’t all receive the help we need or, because of ME’s fluctuating nature, you could be constantly crashing even with the right support in place - making school unmanageable. If this is happening to you, a better choice may be online schooling! I’m applying to Apricot Learning Online for GCSEs this year which I’m super excited about - they offer online lessons, an assigned key worker per student and they have services specifically for those with ME. Again, choosing your online school will depend on what your needs are but there are great options out there.
Access to this could be difficult, not everyone will have the money to pay for this themselves, so I really recommend looking into or applying for an EHCP! An EHCP, or Education Health Care Plan, is a personalised plan that outlines any different or special educational needs you might have and, when the EHCP is in place, your local authority must provide you with what you need. This can come in handy if you’re in mainstream education - this would make facilitating support from your SEN much more straightforward - or being homeschooled.
And there are still other options! I really liked self-studying when I was struggling cognitively, especially in the gap between leaving school and now applying for online! There’s no timetables or lesson plans you have to stick to - unless you choose to make them yourself - so everything is fully flexible and more manageable. I’d say it’s one of the best ways to start getting back into studying if you haven’t been well enough for a while or you’ve been unable to attend school. You can buy great textbooks online or use websites like FutureLearn - they offer free online courses with unlimited time to complete and a certificate at the end too. I took one this summer and I loved it!
And my last tip is on socialising. Socialising in school can be difficult, especially when you’re already trying to pace schoolwork into your limited supply of energy. I recommend seeing if your school has any clubs you’re interested in and maybe suggest swapping a day of your schooling with attending one to your SEN. I didn’t have any luck with this so instead I made friends in-between lessons or online! Online ME support groups are incredible, it’s so helpful and reassuring to have friends who understand how you’re feeling. Plus, online friendships can be made from the comfort of your own home, whenever you have spare time, so much more ME friendly and manageable!"
By Sian, 15 years old