The Brain Charity

Multiple sclerosis (MS) is a messy and unpredictable disease. It can smoulder away for years without any obvious symptoms, or it can hit you suddenly with all the force of a cartoon anvil. Its consequences can be as mild as a limp or as serious as grinding nerve pain and paralysis.

In his new book Metamorphosis: A Life in Pieces, Robert Douglas-Fairhurst investigates some of the challenges MS poses to our usual ways of living and thinking. He also reflects on some of the things it has taught him since he was diagnosed with a progressive form of the disease in 2017.

Here, he shares his top 10 tips for dealing with MS.

1. MS remains one of the least understood of diseases (it even looks like a squashed up version of the word ‘mysterious’) so don’t be alarmed if your symptoms fail to match what’s written down in the medical textbooks. The world of MS is one in which a few rusty signposts are dotted around in vast stretches of unmapped terrain.

2. A year after my diagnosis I chose to undergo aHSCT, a form of stem cell transplant that is currently being put through a major clinical trial in the UK and seems to be by far the most effective way of stopping MS disease progression. Oddly, it wasn’t something my neurologist had ever mentioned to me. The moral? Even the best doctors are puzzled by MS, so don’t be afraid to ask questions or research different forms of treatment that might help you.

3. A disease like MS is a social malady, because it has an impact on many people other than you. And most of them will prove to be kind and keen to help, but you will need to let them know how. If you need a friend to do some shopping for you, ask them. If you want them to stop sending you their latest internet discoveries (bizarre special diets, funky walking sticks, and more), tell them. Don’t be embarrassed into silence.

4. If you see a toilet, use it. Whether or not you think you need it yet. In the unpredictable world of MS, the bladder is king.

5. Even if your body is breaking down, you can still discover an unexpected joy when any part of it works thoughtlessly and without compromise, as you experience the wordless pleasure that comes from the smell of a favourite perfume, or the touch of loving fingers on skin.

6. ‘Illness takes away parts of your life but in doing so it gives you the opportunity to choose the life you will lead, as opposed to living out the one you have simply accumulated over the years’ (Arthur W. Frank).

7. Even when things are going badly, it’s important to keep a sense of proportion; or, put another way, a sense of humour.

8. Reading books and watching films about other people who have lived with – and sometimes died from – your disease is one of the best ways of learning how to deal with it. We learn by imitation, even if the people we are imitating are imaginary.

9. ‘You must go on, I can’t go on, I’ll go on’, the words that close Beckett’s novel The Unnamable, aren’t the sound of someone pulling themselves together and bravely battling onwards, but a series of thoughts that are likely to chase each other through your head several times a day.

Finally, and most importantly:

10. Everyone who has MS is likely to have a different set of tips for dealing with it, reminding us that the course of each patient’s disease – and the way they experience it – is as unique as a set of fingerprints.

Click here to buy Robert’s book.