As with any health condition, it can be difficult for someone who doesn't have M.E. to understand what it's like to live with the illness. So your friends, family members or boyfriend/girlfriend might not understand why you need to manage your energy and rest so carefully.
This page offers information about telling those close to you about M.E., and is based on things that young people with M.E. have told us they found useful when it comes to managing friends and relationships.
To help them better understand the impact of M.E. more generally, you could show them one of our short films, such as the Hidden faces of M.E. Alternatively, Christine Miserandino's Spoon Theory is a great way of showing others what it’s like to live with a chronic health condition – you may have seen references to "spoonies" on social media, and this is where they come from.
Sometimes you have to trust your friends to understand and take on board what you are telling them. Placing this trust in others isn't always easy, and unfortunately, not everyone will understand. This is when you will find out who your real friends are – and some people may surprise you in a good way.
If you feel like you don't have the energy or confidence to tell your friends about M.E. and how it affects you, it might help to be in touch with other children and young people living with the illness. This will help you feel you are not alone, and you can share tips on how you cope with M.E., including how it affects your friendships and relationships.
Friendships can be hard for young people. Friends care, but don't know how to show it so don't make contact. This doesn't mean that friends don't care, usually they just don't understand.
A way of building confidence is to focus on the things you have achieved. Concentrating on your achievements rather than the symptoms your experiencing can be very uplifting. You could also consider having counselling - this can help you to be more positive, more open about how M.E. affects you, and how to be confident when asking for what you need.
Remember, even when you were well, there may have been times when you felt embarrassed, shy, nervous, upset, or angry. These are natural feelings, whether you have M.E. or not.
Friendships for people with severe M.E. are not always easy. Your friends may find it hard to understand that you are too ill for them to visit or talk to. The severity of your symptoms may scare them, and you might have to rely on family members to help maintain those friendships.
If you are too ill to email or text your friends, or to talk on the phone, you could dictate your messages to a parent or carer who could send them for you. You could send the same email round to lots of your friends, or speak into an audiotape if you can and send that.
It is very hard not to overdo things when your friends do visit. Using a timer that goes off when the time's up means that neither of you has to actually say it. Friends could visit you for a short while, chat with the rest of the family while you take a rest, then visit you again before they leave. If you can't hold a conversation, your friend could bring a book with them or something else to do – they need to know that it's nice them just being there to sit with you, even if you can't talk to them.
Action for M.E. offers a buddy scheme for our younger members (under 18) who are severely affected, so that you can receive cheery letters and cards from less severely affected people your age, without being expected to reply. Contact our Information and Support Officers for more information about this.
[February update: Information about severe M.E. will be moved to Coping with severe M.E., which is in the process of being written]
You might feel lonely, because you have to spend time by yourself. It could be helpful to create a list of activities you can do at this time because when you feel lonely it's challenging to think about what you are able to do.
It's important to create a nice environment. Think about what space you might move to when you want to feel more connected. What are the items that make you feel better? This could be a comfy chair, a hot waterbottle, your favourite blanket and a feel good movie or chatting to or playing with friends online. Keeping a diary can help you express your feelings without having to share them with another person, sometimes it's okay to cry.
If you're feeling isolated join our young people's forum where others will understand your condition without having to explain.
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