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 your loved ones about M.E., and is based on things that children and young people with M.E. have told us they found useful when it comes to managing friends and relationships.
You can also find out more about how M.E. might affect your relationship with your friends.
If you have come to this page because your friend has M.E. and you want to know how best to support them, we have information and advice for you, too.
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 even harder for boys because they chat less and hide their feelings more. Male friends care, but don't know how to show it and don't make contact. By building up your confidence and making an effort to continue relationships or speak up-front about your illness, you can reduce the isolation you might sometimes feel.
Another way of building confidence is to focus on the things you have achieved despite being ill. Concentrating on your achievements rather than the things M.E. prevents you doing can be very uplifting. You could also consider having counselling - this can help you to be more positive about yourself, more open about how about M.E. affects you, and how to be confident about asking for what you need.
Remember that, even if you were well, there would still be times when you feel embarrassed, shy, nervous, upset, or angry. Everybody has these feelings, whether or not they have M.E.
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.
You might also feel lonely, because you have to spend a lot of time by yourself. It's helpful to try to learn to enjoy your own company. Accepting your situation (for now) is the first step to happiness.
Planning to do activities little and often, rather than all in one go, helps beat boredom and is far better for your health. If you can do an activity for, say, 15 minutes, then rest for the remainder of the hour, that will spread your activity out all day, and gives you recovery time in between so that you don't feel ill for days afterwards. Over time you may find you are able to extend the 15 minutes and feel a real sense of achievement. Find out more about this on our Energy and rest page.
It is said that people come into your life for a reason, a season or a lifetime.
When someone is in your life for a REASON, they will be there to meet a need you have, or maybe help you through a difficult time. This help could be deliberate on their part or accidental (perhaps someone who is there to test your commitment or patience). Either way, once their time helping you is over, something will happen to bring your relationship to an end. Sometimes they quietly fade out of your life. Sometimes they walk away. Sometimes they force you to take a stand. Whatever happens, your need has been met, and their work is done. It is now time to move on.
When people come into your life for a SEASON, it is because they have something to offer you, and your turn has come to share, grow, or learn. They may bring you an experience of joy or peace, or make you laugh. They may teach you something you have never done. But only for a season in your life.
The people who are with you for a LIFETIME stick with you through reasons and seasons. Lifetime relationships teach you lifetime lessons and help you build a solid emotional foundation. Accept the lessons, love the person/people; and acknowledge, value and be thankful for the people who are with lifetime friends.
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