Going to school
There are many young people who are affected by M.E. but how it affects your education will depend on your symptoms. You might find you need to rest during break and lunchtime, or you might not be able to go to all your lessons. You may need to do some learning at home instead of going to school, or you might be too unwell to go to school at all for a while.
It’s important to remember that your experience of M.E. may be different to someone else’s, and that your symptoms can change over time. Something that you were able to do last week could be more difficult this week. It is important not to do too much if you find that you are struggling. It can be tempting to try and achieve the same things as before and as your friends, but this can make you feel worse and even more exhausted.
When living with M.E. it is understandable that your education will be effected. The symptoms you experience may make it hard to focus in lessons, work at the same pace as you did before, cope with all the sights and sounds that come with being in a classroom etc. You may be too ill to attend school/college full time or at all for a while.
Your school/college has to provide an education to all pupils and that includes you!
Remember you did not ask to be ill and the challenges M.E. creates do not mean you cannot achieve; it just means you might need a bit more support or a different approach to help you get there.
You and your parents/carers should talk to the school/college about what you are able to do. This should include what you need to continue your learning, and how you can keep contact with your friends, and feel included in a way that works for you.
When talking to the school/college about what you need, it is important that you and your parents/carers share information from your doctor so that everyone is clear about what is happening with your health.
It is likely that, by working with you, your parents/carers and doctor, the school/college will put in place an Individual Health Care Plan (IHCP), which is a document designed to explain what support you may need related to your education. For example, you might find a ‘Time Out’ card helpful to let staff know if you need a break, or extension periods to complete homework in a manageable time frame.
If your M.E. symptoms are more severe and you are finding attending school/college and keeping up with work difficult, it is important that your parents/carers talk to your school/college about an Educational, Health and Care Plan (EHCP). You can talk to them about this yourself if you are over 16.
An ECHP is a legal document which is created if your school/college is unable to help you access your education in the ways you need. For example, if you need to stay home and are able to work for short periods, a one-to-one tutor could be a good idea; the school/college would need the Local Authority to provide that extra member of staff. The EHCP is a positive step that helps you and your school/college put in place that can help you access lessons and learning in a way that works for you.
You and your parents/carers may find it helpful to look at our factsheet Education support for pupils with M.E. which provides some guidance about working with the school/college and information about support plans.
Your school/college is there to help you so it is important that they understand how M.E. is affecting you. Make sure that you and your parents/carers keep in close contact to keep them informed.
What to expect
Some things that children and young people have told us they have found difficult about school are the following;
- getting to school on time
- concentrating on activities, tasks or what your teachers are saying
- remembering new information
- being able to answer a question quickly
- organising themselves for lessons class (remembering a pen, your book, timetables).
A particular challenge, reported by many young people, is the physical act of moving around school buildings and especially going up and down stairs. You may have taken these activities for granted in the past, so it can be really frustrating when you find it difficult because of the noise, distance and number of other young people to contend with.
You may find that some subjects are more tiring than others as they are more physically demanding, for example PE and drama, or those you normally struggle with harder to focus on. Whilst it’s good to continue with lessons that you enjoy, you should remember that it’s important to balance this with rest and relaxation.
If you’re able to attend some of your lessons in school, then they should make adjustments to help make things easier for you. With the support of your parent or carer, you should contact your school so you can discuss how your teachers, support staff and the school nurse can best support you.
We have listed some potentially useful organisations in England, Wales, Scotland and Northern Ireland on our useful contacts page. And you or your family can always get in touch with our friendly, experienced team for information and support if you need it.
Some things that your school or college might be able to provide include:
- a quiet place to go if you need to rest, perhaps a reading room or medical office; you may want to use this space to practice relaxation or have something to eat
- IT solutions such as Skype or a tele-presence robot to minimise travelling time to school/college.
- a named adult that you can go to if you feel unwell, or someone to talk to if you feel upset or concerned
- letting your teachers know that you need to take breaks, and that you shouldn’t be expected to do the same activities as other children if you aren’t well enough
- some guidance on catching up with missed work if you’ve been away from school for a while; this might be available in accessible formats, such as online learning packs
- reduced school timetable
- extensions for homework assignments
- a place (locker, classroom) where you can leave any school books or heavy items that make moving around school tiring
- use of a time-out card to let your teacher know that you may need an unscheduled break
- staggered start and end times to avoid crowded public transport or additional length journeys in a car caused by rush hour traffic.
If you have a medical need, in your case M.E., which is preventing you going to school or accessing some of your lessons, then your school should meet with you to discuss drawing up an Individual Healthcare Plan. We have a free downloadable factsheet on statutory plans for special educational needs that you and your parents may find helpful.
If you have missed more than 15 days from school, your school can ask the Local Authority to arrange teaching at home. These 15 days do not have to be consecutive, but do have to be related to the same medical condition. Local Authorities often ask schools to complete the referral to tuition at home. This is because schools must show how they have attempted to support you in continuing going to school. Support from the Local Authority will vary but often will provide you with an education of five hours within the home environment. The actual amount allocated can be agreed depending on what activity level you can cope with, for some this may begin with just five-minute sessions.
What about my friends at school?
As someone with M.E. it can feel lonely to be at home whilst other people are at school. Try and keep in contact with your friends by phone, text, WhatsApp, email or social media.
We know that if you have been away from school for some time you may be nervous about returning. This is really normal, and other young people experience this when they have been off school. It can also be difficult to explain to your friends, and some young people may find it difficult to understand what M.E. is and how it affects you. Some of the young people we worked with designed our Explaining M.E./CFS resource to help with this.
You might ask for extra support from a parent or carer to talk to your friends’ parents about your condition. This may mean that they are able to answer questions that your friends may have. If anyone at school is unkind to you because of your illness, don’t be afraid to let your parent, carer or teacher know. You’re probably not the only one they’re being unpleasant to, and they may need help understanding what M.E. is and how it affects you. Sadly we do hear from young people where teachers are unsupportive, and even unkind. This is wrong and if it happens to you please tell a trusted adult or other teacher you get on well with.
Read more about how to talk to your friends about M.E.
How will having M.E. affect my hobbies?
The answer to this question depends on your level of ability and what the hobby is. Physically demanding hobbies such as playing football or netball may become difficult for you. It is tempting to try to push yourself to carry on with them, but this could make you feel worse. Other hobbies which require concentration may also be difficult; so, things such as reading or playing computer games may still be draining, affect your energy levels and your ability to do them as well as before you became ill.
To help your body get better, you might have to stop doing some of your favourite hobbies for a while or do them less often. You could try to enjoy your hobbies in a less energy intensive way – if you enjoy football but are too unwell to play, perhaps you could watch it on TV or join an online group. If you feel that you’re able to start doing some of your favourite activities again, try and set small, achievable goals to begin with.
Read more about managing energy and rest.