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 you have a long-term medical condition such as M.E., which is impacting your education by, for example, preventing you going to school/accessing some of your lessons, your school is required to put Individual Healthcare Plan (IHCP) in place. This should be put together with you, your parent/carers, your school and your doctors, and you can use it to help explain how M.E. affects you.
You may need to consider applying for an EHCP or statutory plan if your child has more educational needs than the school can provide for. We have a free downloadable factsheet, Support plans for pupils with M.E., that you and your parents may find helpful. It includes a template letter for requesting an EHCP with examples of how M.E. is a special educational need and ideas of what information to include.
Another option is an Education, Health and Care Plan (EHCP) can be put in place. While the name sounds similar to the Individual Healthcare Plan above, they are different plans, with a different purpose. An EHCP is helpful if you need more support than currently generally available through your school. It's best for you and your parents to start the EHCP process as early as they can, as it is harder to put one in place when you have left school.
The process of applying for plans like these can take several weeks so it is worth starting the process as early as you can.
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 a young person with M.E. it can feel very lonely to be at home whilst other people are at school. Try and keep in contact with your friends even if you are finding it difficult to leave the house. You might find ways such as replying or sending a text or an email, using social media, or more directly such as Skype or by phone.
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. It might help to share Action for M.E.’s Children and Young People’s Services leaflet with them.
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 person 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.