An ME charity recently asked what, other than understanding and accepting their loved-one’s illness, friends and family could do to support a person with ME/CFS. I had a think about it, and then forgot which charity had asked and where I had seen the question in the first place. But it seems a shame to waste the effort I put into thinking, so here are the results. Thank you to the many friends and family whose true love and support are represented here. And to both the late and present Pusses, for their outstanding contributions, in the form of day-long lap-naps, to item 4.
1. Remember that the person is ill, and needs care. Everyone notices when someone they love falls ill at first, and they know what to do. The sick person is scared, upset and confused, their life changes. We send flowers, pop round for a cup of tea, fire off an encouraging text. But time goes on, there may be nothing in particular ‘happening’, and the person may learn to cope with their own illness better. It is easy to forget that they are still actually suffering from the same symptoms. After six years, it means a lot to me when I get a little reminder that my friends still know that, behind the coping strategies and the smiling face, is a sore, exhausted person who needs a hug.
2. If you don’t understand, don’t ask the sick person about it. Even the most caring and well-informed person will naturally have gaps in their knowledge, or times when they wish they could have their old friend or relative back, able to do all the things they used to do. Guess what – they wish the exact same thing! Don’t feel bad for having these moments, just remember, it’s not about you. If you don’t understand something about the illness, that’s what google is for. If you don’t understand how they are handling it, ask yourself, Do you really need to? A sick person is not an encyclopaedia, and they don’t have energy to explain to everyone they know. If you get frustrated, keep it to yourself or talk to a third party about it. Most likely, the person concerned is already worried about the effect their illness is having on those around them, and taking out your frustrations on them is just not fair.
3. Plan from their perspective. One of the most depressing things about having ME/CFS is constantly having to say, “No,” to things that they would really love to do. So if you are planning something you would like your ME/CFS buddy to be involved with, ask them first what will make it possible. It’s a bit embarrassing to be presented with a plan made among healthy people and asked to join in, only to have to request a load of changes and feel like a fusspot. Make any journeys easy – if they need to take a taxi, take one and don’t moan about the cost. Time things to suit them. Don’t try to shoehorn in more than they can manage. Or accept that they might only join in for part of the activity. And remember that their condition fluctuates constantly so that they may have to cancel at the last minute.
4. Save their energy. Once a plan is made, stick to it! Changes can be stressful and tiring. Turn up on time: your friend is making a big effort to join you and only has limited energy, so don’t waste that energy by making them waiting for you.
Obviously, I can’t speak for everyone with ME/CFS but I am terrible at protecting my own energy and constantly trying to do more than I can sensibly manage. So, if you are visiting someone at home, make your own tea or coffee, wash your own mug, even if they protest. Phone ahead and check if they need milk or other essentials brought in. By doing so, you free up energy and therefore time to spend with you, and reduce the time they will need to recover afterwards.
The main thing is, remember that this is still a person, and your friend, child, sibling, partner. Remember why you love them, and tell them. Be kind.