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Living with M.E.

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Am I a carer?

Am I a carer?

Carers Trust defines a carer as "anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support."

You may have found yourself in a caring role suddenly, or perhaps it has gradually increased over the years.

Either way, your role and that of the person you are caring for has changed. In order to cope with these changes, your relationship will need to adjust. This can be very difficult at first as both of you struggle to reassign yourselves, facing many challenges along the way.

Both of you need to work together in order to make the most of your new situation and move towards a better quality of life. This means accepting the illness and its restrictions.

Becoming a carer can evoke many emotions in you that are difficult to accept.

It is not unusual to feel a sense of loss for your past life or bitterness towards your new situation. These are perfectly natural feelings that you do not have to feel guilty about. You may not be the person with M.E., but you can still feel just as trapped, lonely and frustrated.

Acknowledging your feelings and discussing them is a vital step in the caring process and can be very helpful in developing and maintaining your new relationship. You may find it helpful to talk through these emotions with someone.


If you are working as well as caring, you will effectively be juggling two jobs and this can be very stressful and demanding. It will be worthwhile finding out if your workplace has a policy to support carers.

Handing your employer some literature about M.E. may also be beneficial in helping him/her to understand the condition and the constraints you are under. You can browse our the booklets and factsheets in the Resources section for Employers and teachers for suitable information.

You may be thinking about leaving work altogether in order to care full time.

This is a decision that needs to be thought through carefully as giving up work will mean a drop in your income and in the time you will have away from caring.

Think about other options available to you before leaving, such as the possibility of reducing your hours or finding a new job that is closer to home so you are able to get back if needs be.

If you do decide that leaving work is the right option for you, you and the person you care for may be entitled to claim welfare benefits.

Advice for carers from people with M.E.

We asked people with M.E. to provide us with tips and advice that they would like to pass on to people who are looking after someone with M.E. Below are just a few of the responses we received.

"Just understand. If I can do something one day, it doesn't mean that I can do it the next. Also encourage and support, without encouragement and support I wouldn't be able to get through the days (particularly the bad ones)." - Claire

"Don't take it personally when everything you say, do, or suggest is wrong. It's not you they're 'hitting' out at, it's the disease." - Nicki

"Tell them you believe them, that you love and accept them completely no matter how low, angry or desperate they become. Hug them. Be present." - Sarah

"Remember that people with M.E. have noise, light, movement and chemical sensitivities. These are often worse on bad days and can worsen a person's M.E." - Jaci