Caring for someone with ME/CFS/PVFS

The chances are if you've come here looking for advice for caring for someone with ME/CFS are that you've already accepted that the person suffering with the illness does need some help.

As so many of the symptoms are not visual, it can be difficult for people to accept the illness in a sufferer, having seen them at full health. One of the first and most important things you can do to help support them is to educate yourself about the symptoms and learn to recognise them. Although not the same for everyone, stereotypically, sufferers don't know when to hold themselves back and by learning to recognise when they are struggling, you can do a lot to hold them back and work at preventing further relapse.

As a carer, you may be required to attend doctors appointments so be prepared that there are doctors out there with differing opinions on how best to treat the illness. The sufferer themselves will ultimately know what is best for their own body, so if you are given advice that seems wrong or contrary to what feels right, do speak up on their behalf. Being told an illness is in the mind, or being given guarantees of recovery will not help in the long run as the patient will delay their acceptance of loss of health.

Given the unpredictability of the symptoms, you will need to be prepared to be as flexible as possible that the sufferer will make and change plans as the symptoms flare up. Making plans will become easier as you learn to manage the symptoms.

Although you still have your loved one with you in body, you may need to be prepared for a very different person in the future. Heaping pressure on them to live up to previous standards may be unrealistic and could leave sufferer and carer going through a grieving process for the loss of a person you have been familiar with.

Perhaps the single most important help you can give when caring for someone is a listening ear. One bi-product of the illness can be depression and although it is recommended speaking to a professional counsellor, loved ones can provide a pivotal role in lending a listening ear to share the pain of the loss of one's life.

This may seem like a burden, but in time they will learn that a positive frame of mind will go a long way to managing the symptoms. Exposure to arguments, stress of negative situations can cause exposure to relapse and should be avoided at all opportunity. Help the sufferer to communicate freely and positively about their struggles.

Fore more information why not visit our forum and speak to other carers/sufferers and how they cope with the illness. Please click the link below to join the forum.