Severe ME : THREE VERY BASIC CONCEPTS THAT CARERS NEED TO GRASP
1. Severe ME is unlike anything else you have come across. Just about all you think you know will be turned on its head. Do not, for one moment, ever think you know better than the person. It is extremely unlikely you will even begin to grasp the depth and breadth of what the person is going through, they are so unimaginably profoundly ill and disabled, so you must, gently and always in partnership with the person, respond accordingly.
2. At all times, be aware that if you get it wrong, you may cause catastrophic harm. You can never, ever afford not to be aware of the potential impact of your presence, your movement, any perfumes on your clothes, the slightest noise you make, even your energy levels. You are going to need to learn, on multiple levels, the best ways to be with that person, so that you do not make an intolerable situation much worse.
3. Everything depends on how well you communicate with the person. You must learn how the person communicates and how YOU must communicate with them, so as not to cause distress, confusion, overload or deterioration.
For more information on caring, see: