During 2020, I wrote a book about living with MS. I decided that the best people to ask about living with the condition were people who live with the condition. So I carried out interviews, asking people with progressive and relapsing remitting about how they deal with it, and how it has affected various areas of their lives. At first, it was going to be a book to explain having MS to people who don’t have it, but after people kept saying the same things to me, I realised that the time around diagnosis could be handled better, so I wrote it particularly for people who are at that stage. But it should be interesting and useful for lots of other people as well.
First off, Multiple Sclerosis is a bloody silly term. Everyone understands the word ‘multiple’, but pretty much no-one understands the word ‘sclerosis’; it’s almost a meme on MS patients, because it’s confusing and difficult to understand, like MS itself. Could we please have a better word? Most people don’t know what Multiple Sclerosis means, so we immediately feel uneducated and confused, and it might as well be called, just grabbing an unusual word out of the air, ‘Futtocks’ (which really is a word, and not even a rude one). At least people would remember it more easily, and not confuse it with all the other neurological conditions that begin with ‘m’.
Having MS doesn’t only mean being ill and all that that entails. You also need to become masterful at jargon-busting: MS PPMS SPMS RRMS DMDs DMTs GP CF MRI LP HSCT CAMs THC CBD CBT PIP ESA UC Vit D, to name but a few. And all the ones that aren’t related to MS, like MND, which aren’t relevant, but which you may find that people confuse with MS.
So you’ve got this thing wrong with you, and you don’t know anything about it, or anyone with it, but you need to get on with your life. You’re having scary tests, and horrible symptoms, and no-one will say anything definite to you, other than that it won’t kill you, which might not feel like an advantage for a while. And you’re told that you have to accept it. Your reaction? ‘No bloody thank you, it’s not a box of chocolates.’ At this point, it becomes clear that your medical team is speaking a different language from you. OK, they’re not coming out with Russian, but in some ways, they might as well be. They’re telling you to accept the diagnosis, when in fact they mean that you must acknowledge it, and then you can get on with dealing with it. But when a doctor or nurse tells a patient to accept the MS diagnosis, the patient is often hearing something along the lines of: ‘take it lying down, it’s just the way it is, you can’t argue against it, and let’s face it, you probably deserve it.’ If your head is hearing something like that, you can’t deal with it; you will just rail against it, and probably do the opposite of what’s good for you.
So sod the word ‘accept’, and when you hear it, tell yourself instead to come to terms with it. And tell the person who’s telling you to accept it why you can’t accept it, and would they please refrain from telling you to do the impossible. If you decide to come to terms with the diagnosis, you are less likely to feel pathetic or to feel beaten; coming to terms with something involves taking a bit of control, negotiating with the enemy, and deciding how you’re going to behave with it. Your input matters. It really, really matters; I can’t stress that enough. It will still take time, because there’s so much to process, but you will probably get to the promised land of being able to get on with life a bit quicker.
But the good news just keeps coming, as in the midst of all this announcing that your life will never be the same again, you are told that you have a progressive disease. And now, the medics are coming out with Doublespeak. Normally, progress is a good thing; we like progress, we want more of it. Except when it comes to disease of course, when we want precisely the opposite. So the medics are using completely the opposite language to what they need in order to convey the position effectively to the patient. At least MS isn’t diagnosed by means of a blood test, with positive results meaning a negative outcome, and negative tests being a positive outcome. Medics really should stop trying to do irony; it’s not their strong suit.
And so now you’ve been diagnosed, you’re a person with MS, which is supposedly shortened to pwMS. Except it’s not shorter when you say it, is it, because person with MS has five syllables, while pwMS has six. Perhaps they could start pronouncing the ‘w’ as ‘v’ (well, alright, not in the wider context. I’m not advocating Villy Vonka’s Chocolate Factory or Villiam the Conqueror - don’t be daft, just here), because pvMS would be quicker to say than people with MS, and it’s unlikely to be confused with anything else.
Health professionals then proceed to avoid using the word ‘normal’, because they think it insults their patients. But this assumes that calling someone ‘normal’ is a compliment; after all, Stalin was normal, in the sense that he was able-bodied. The term ‘able-bodied’ clearly says nothing about the health of someone’s mind; the term might as well be ‘able-bodied-only’, though able-bodied-only people haven’t cottoned on to that yet.
MSers are neither abnormal or subnormal; they’re just not normal, and for a lot of MSers, it’s fine to acknowledge that. It’s not normal to need a walking stick or a stool to sit on in the shower, but neither of them makes a person useless or stupid. It’s anything but. Using aids to manage your disability is just sensible, and gives you more chances of taking more of a part in society. And to go to the pub. It’s admirable to overcome a difficulty. Not being normal is not the same as being finished. It’s not saying that you’re stupid - plenty of normal people are unfathomably stupid. It’s saying that your life is more difficult than the norm, and you should be respected for that. And you should respect yourself for that too.
Next time: more difficulties around diagnosis
My book is called ‘MS: the beggar we live with’, and is available on Amazon.
This blog is primarily based on the experiences of lots of MSers.
It was 2013 when RRMS decided to set up shop on my front lawn. I struggled with it at first, but now I'm actually writing about it, much to my surprise. In 2020, I wrote a book about living with MS, based on interviews with people who have MS. It's aimed particularly at people who have recently been diagnosed, but it's also useful for the people round them, to help them understand it better.
I'm lucky that I have supportive family and friends, and during lockdown, I learned how to make croissants, and all this makes life very very bearable.