Are you new to ME?

Other People

Many, many people are going to ask you about ME. Even those closest to you will have difficulty in understanding it. I know I found it hard to understand what my son really meant by a foggy brain, even though I could see its effect: or how he could wear a coat to keep warm when others were in shirtsleeves. Now that I have ME myself, I know.

If the person asking is genuine, never use the word "tired". That doesn't convey the right message: "drained", "exhausted" or "feeling constantly unwell" are better. The best method that I have heard of explaining some of it is the teaspoon method. Grab a handful of teaspoons (or something similar) and explain that this is your day's energy. Ask the person what they did today. They may start with "Got up and went to work." "Ah, hang on a minute, did you have a shower?" "Yes." Remove one teaspoon from your hand and lay it down, then ask "And got dressed?" "Yes." Another teaspoon bites the dust. "And did you get your own breakfast or was it there on the table for you?" Hover your hand over the next spoon while they answer. When they see how quickly the spoons disappear, and realise how much they take for granted, they will start to understand energy management. This is a well-known idea, and #spoonie is used on Twitter. (Did you hear about the two city dwellers camping in the countryside who stayed up all night wondering where the sun had gone? It dawned on them in the end.)

Sometimes people will tell you how well you look. It can be frustrating, but they mean well, they just don't really know what to say. A gentle reply is to say "Yes, you have to be pretty strong to look this well when you feel as bad as this."

You will come across friends or relations who "know" people who have recovered from ME by (say) bathing in fermented yak droppings for a month. Other "well-meaning" people will ask what on earth you find to do all day, with an air of "if it were me, I would just snap out of it". Sadly all these people suffer from an incurable illness - stupidity. I used to think it was ignorance, but that can always be fixed by an explanation.

It does make like difficult to have a debilitating illness that is invisible to the people around you. It can mean that people over estimate what you can safely manage and it is important to learn to manage not only your own but also other people's expectations. If you are open and honest about how you are feeling they will have more chance of really understanding what you are up against. I would encourage you to give them information about ME so that they can understand better and therefore be in a position to support you more effectively.

You will also hear a lot about ME being caused by stress. Remember that for a very, very long time they said exactly the same thing about stomach ulcers (and asthma, and MS, and…), until Dr. Marshall and Dr. Warren found that the bacterium Helicobacter pylori lies at the root of the trouble for most of them. It is always a good idea to reduce stress levels when energy is so short, but don't mistake that for being a cause of ME.

Either learn to let it go, or develop a very sharp reply. One possibility is to say "I suppose you would say to exactly the same thing to someone who had just come out of hospital after suffering a stroke." OK, strokes can be fatal, and the number of deaths from ME is thankfully very small. Having had several close relatives suffer strokes, I am not in any way diminishing them. But however they reply to your comment, they will be digging themselves into a hole. Things like, "But strokes can leave you very disabled" - so can ME. "But you can see the effects of strokes through scans" - a study at Stanford University found abnormalities in both the grey matter (the thinking bits) and the white matter (the connecting bits) of the brains of people with ME. On a completely different area, Prof. Julia Newton found that, on average, the muscles of patients with ME produce 20 times as much acid as the muscles of healthy people: no wonder it hurts so much when we exercise.


It is good to have some names and some facts to hit them with.