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 is also of use to people who are around MS - family, friends, practitioners - to understand better what MS is and what it’s like to live with. And what is done and can be done to slow its progress.
Question: So you’re not normal, but what is a normal reaction to diagnosis?
Answer: the way you reacted is the normal reaction. By which I mean, however you reacted, it’s normal. For many, it’s just devastating. Although there are people diagnosed in their teens (and sometimes even earlier), most people are in their 20s, 30s or 40s when they get the diagnosis. They have got somewhere in life, they often have ideas about what they want to do in the next five or ten years; they have responsibilities; they have mortgages; they have kids; and so on. If the news comes out of the blue, with a relapse just happening when the person had not thought they had any symptoms, or when they had ignored symptoms hoping they would bugger off, they feel scared, confused, bewildered, angry, unsure, unconfident, trapped, limited … in short, their whole world is rocked. Their future is uncertain, although it is likely to include more than the average dose of doodoo.
Other people have had to wait for a diagnosis, because their symptoms and medical history didn’t give enough information for the doctors to know for certain what was going on for a while (sometimes several years). They are sometimes informed that they have some other neurological disease, and then have to wait x long before learning that they ‘only’ have MS. Which might make them think ‘phew’ for a while, but then the reality of having MS hits them. And guess what? They have got somewhere in life, they often have ideas about what they want to do in the next five or ten years, they have responsibilities; they have mortgages; they have kids; and so on. And they feel scared, confused, bewildered, angry, unsure, unconfident, trapped, limited … in short, their whole world is rocked. Their future is uncertain, although it is likely to include more than the average dose of doodoo.
What’s going on? Why can’t you settle? Why can’t you sleep? Why can’t you laugh at jokes any more? You are grieving, that’s what’s going on. When someone close to you dies, unfortunately there is quite a bit of certainty. You know that the person isn’t coming back; you know the end of the story. It’s upsetting, sad and it takes time to get over it. When you are diagnosed with MS, you know you are losing and will lose more, but you don’t have any certainty, and that is incredibly tough. Most likely, you thought you knew where you were going and what you were doing - at least had an outline plan - and instead you find yourself in the middle of a minefield and you have no idea how to avoid the landmines. People pick their way through though, but it takes time. Most people say that it takes them about a year to get their heads round it, and many seem to take longer than that. If you’re scolding yourself because you feel stuck and can’t make sense of it all, that’s because it is phenomenally difficult to make sense of, and it affects every area of your life. That’s why
you’re struggling. And the problem is (or one of the problems is) that the more you understand, the more you realise that you still need to understand. But people get to a stage where they know enough to enable them to live their lives. They find their own centre of gravity. It never becomes easy, but it becomes doable.
And bear in mind that the medics are living in a different world from you. Often, they have charged their way up the promotion ladder without even holding on with one hand. Meanwhile, your career and life plans generally have been stopped dead, and you have no idea when or if they will be resurrected. You can be pretty sure that the doctors have precisely no idea how it feels to have buzzing toes or throbbing legs, or a bladder in spasm, or burning wrists, or freezing burning hands* (or whatever delights MS conjures up for you). *and in case they’re wondering, no, they can’t count the sensation they get after a ten mile run as being anything like the pain that their MS patients have. If they think it’s the same, it’s no wonder if they fail to understand the problems that we are experiencing.
So it can be very difficult to communicate with people that you don’t want to communicate with, about a subject that is new to you and very very familiar to them, especially while your head is spinning, or your knee jerking … and so on. (You know the drill.) Anyway, when you travel to a new country, and you don’t know the lingo, you begin with simple phrases so that you can make yourself understood in shops and cafes. Get diagnosed with MS, and you find that you’re trying to understand both Greek and Latin spoken at the same time, without a dictionary or an interpreter, or even any desire to learn either language, and you feel like sh*t anyway because your central nervous system is in shock, your immune system has been taken over by a poltergeist, and you have just learned that there is an increased risk of your kids joining the MS club. Yes, doctors are very clever, and they find MS fascinating, but soon after diagnosis, or in fact ever, you may well not be fascinated, and might only be able to think about whether you should chuck heavy breakable objects out of windows until either your MS is cured or you are carted off to prison or a secure hospital.
So it means that often you and the doctors are coming at MS from completely opposite directions. And that makes it very difficult for anyone to make themselves understood. It’s really hard. Some doctors are brilliant at it, explaining your situation to you effectively, and of helping you to move on from complete confusion to living again (let’s call them ‘type A’). And quite a few doctors aren’t brilliant at it, and it’s mainly luck whether you get the superdoctor or type B. But your diagnosis is the same either way, so in that respect, it doesn’t make any difference which type of doctor you get. But in every other respect, it makes a massive difference. The way the doctor deals with you will dictate in part how you react, but it’s not the whole story. They have no experience of having a neurological disorder, so in that respect, they don’t know what they’re talking about. And you know pretty much nothing about MS, so you don’t know what you’re talking about. It’s the Tower of Babel, and often no-one can communicate effectively with anyone.
But however angry you feel, and whoever you feel angry at, probably the least smart thing you can do is to take it out on the doctors, even if they are a type B-. But trying to have a reasoned conversation on the subject is a big ask. Remember that: you are handling the impossible; no-one has all the answers; looking at it objectively is really sensible and we can all do it. But probably not on day 1, or on day 51. Or on day 151. But one day you will, so
giveyourselfabreak. Giveyourselfareallybigbreak, andyouwill findthatyourworldturns rightsideupmorequickly.
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.