Caring for someone

You may be looking at this website because you are involved in the care of someone with M.E. Caring for someone affected by any chronic illness presents a unique set of challenges and stresses and M.E. is no exception.

With M.E. this challenge can be even greater due to the current lack of expert medical care for people with the illness and the particular difficulties encountered when applying for welfare benefits. Although there are situations where medical and social care is of a very high standard, the majority of people still battle with some disbelief or find that locally there are few provisions for those with M.E. If you are caring for someone more severely affected by the illness, it can be very hard to get the support you require.

Caring can be very emotionally and physically demanding and it is important to take time out from the role of carer. Your friends and other carers in a similar position can be a lifeline to help you through the difficult times. Local support groups can offer a wealth of support and information – particularly in relation to your local area.

Being a carer can substantially change the nature of your relationship with the person you are caring for. This can be very hard for both parties and it can be very helpful to talk through any issues that may arise with someone you trust. Our telephone support service can provide the opportunity for a carer, as well as the person with M.E., to talk through any problems or stresses they are experiencing.

As a carer you may be entitled to claim benefits. If you are a member of Action for M.E. you can call the welfare rights helpline for further information.

View a selection of related articles from past issues of InterAction, our quarterly magazine.

Real experiences

Catriona
'My daughter couldn't wait to be 18 and experience living away from her parents but that year she fell ill with M.E. I have looked after her now for nine years. For the last six she has been severely affected and mostly confined to bed. It's easy to go on treating your daughter as a child when there aren't the usual rites of passage and she doesn't leave home, get a job, get married or have her own children. On the contrary she needs your help with the tasks of everyday living. Being both a mother and a carer neither makes me responsible for, nor gives me the right, to make decisions for another adult. In my daughter's situation, it's important for her to have as much control and private space as she can, physically and also mentally and emotionally.'

Russ and Yvette
'Yvette wants to do things, but physically she can't – she's too independent to ask for help, but I know if I didn't help she'd make herself worse. Dealing with a disappointed M.E. sufferer who is also the person you love is extremely upsetting. Caring for Yvette can be tiring, particularly if she's ill in the night, as I have to get up for work the next morning. But it's not all bad: early nights are good – it's nice to cuddle up without worrying about what you're doing that evening and it's wonderful to watch the person you love being able to do things again when they've been through a bad patch.'

Information first produced November 2003. Currently under review.