Action for M.E.

Parents

This page looks at parent issues from different perspectives:

You're having difficulties with your parents/ carers
Your parent/ carer has M.E.

Difficulties with your parents/ carers

You may be experiencing difficulties with your parents because of your M.E. or frustrations due to your M.E. It's a tricky time for both you and your parents. You probably feel pretty fed up at having to spend time managing and recovering from your illness. Your parents are probably feeling worried, protective, and trying to do their best to help you recover.

It may help smooth over situations or prevent the build up of emotion if you:

Talk regularly with your parents/ carers about:

Your physical symptoms: Your parents need to understand how your body is feeling day by day. It may help if you keep a daily diary and jot down all your symptoms. You can then discuss your diary with your parents.
How you feel in yourself: Having M.E. can give you all sorts of feelings that you may not have experienced before. Some people get really fed up or frustrated, which is hardly surprising given how much your lifestyle has changed. Tell your parents how you are feeling. You might want to include this in your diary, or keep a separate private diary. If they understand your feelings then you will be able to work things through together more easily.
What you feel you can do: As your M.E. symptoms can change daily, it's important that you say what you think you can manage that day. Acknowledge though that sometimes what you think you can do and what your parents think you can do may differ. You will need to discuss this and reach a compromise.
Your day-to-day plans: The best way to prevent tension between you and your parents is to agree a daily plan of activities, so you get your pacing balanced. This way you can try to keep your symptoms under more control and also feel you are making choices over how to spend your time. Your parents will know that if you roughly keep to your plan that you are doing the best you can to help your recovery.
Don't spend all day in your room: Tempting though it is to hide away in your room, on your computer or watching TV, it will not help you work towards your recovery. Be realistic but vary your activities; get outside for some part of the day, talk with other people in your home or by phone and do something that you enjoy.
If you are experiencing difficulties that need help or advice, please contact one of the organisations in our useful links.

Many young people find that they have disagreements with their parents over a whole range of things, during their teen years and early twenties. M.E. can make this even worse, particularly if you are highly dependent on your parents/ carers. Talking about any issues can help dissolve tension and help you see each other's viewpoint.

Your parent/ carer has M.E.

Whether your parent/ carer has been newly diagnosed with M.E. or had the illness for some time, you may feel frightened, confused or anxious. To help you try and cope more effectively you may like to think about:

Finding out more information about M.E: You can find out more information under 'You and M.E.', join Action for M.E. and make full use of our quarterly magazine, range of information sheets and welfare rights helpline.
Your rights as a carer: If you spend a lot of time caring for your parent, you may be entitled to extra help. Check out the organisations in useful links for up to date advice.
Asking for help from your relatives/ family friends: You should not have to cope on your own. Looking after and caring for someone with a long-term illness is very time consuming. You may be trying to do exams, a course or training for a job. Don't bottle everything up. If you can, share out the responsibility of caring, your relatives may be relieved that you have asked for help.

It is vital that you look after your own physical and mental health, if you are caring for a parent/ carer. Make sure you get a range of advice and take all the support you can get. Your family may be entitled to some welfare benefits to help with low incomes.

Information produced March 2004