As with any health condition, it can be difficult for someone who doesn't have ME 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 ME, and is based on things that young people with ME have told us they found useful when it comes to managing friends and relationships.
If you’re struggling with your feelings, you are not alone. Here are some links to support you can reach out to right now:
To help them better understand the impact of ME more generally, you could show them one of our short films. 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 ME 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 ME, 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 ME 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 ME or not.
Friendships for people with severe ME 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 can be 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 ME's Young People's Community - which is free to join - offers a buddy scheme for young people who are severely affected, so that you can receive cheery letters and cards from people your age who understand ME, without being expected to reply. We also have a safe and lively forum, where you can chat about coping with ME - but also your hobbies, interests and anything else you like.
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 water bottle, 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.
Having friends with ME can make a difference, because they understand what it's like to live with the condition without you having to explain to each other what you are experiencing. Young people with ME who meet in this way can become friends for life or for a short period of time throughout the duration of your condition.
There might be someone else with ME in your area, that you can see in person, but it's more likely that your ME friends will be online. This doesn't make them any less of a friend, and the connection you have is still valuable. In fact, research has found that using websites with chat rooms or message boards can help young people with ME.
You can meet other young people with ME by joining our Young People's Community, with services including a safe, lively online forum, and a buddy scheme.
