10 Things MS has Taught Me

Molly Froude

I was diagnosed with relapsing-remitting Multiple Sclerosis nearly seven years ago, when I was fifteen years old. One minute I was in a classroom studying for my GCSEs, and the next, I was rushed to hospital. Multiple Sclerosis, or MS, is an autoimmune chronic health condition, where the antibodies in your immune system mistake the myelin coating of your nerves as a disease to fight off, which can cause a range of wacky symptoms.

It’s been a bit of a rollercoaster ride since my diagnosis, which happened unusually

young in my case. This means that a lot of my friends don’t really know much about my condition, so here’s a list of ten things I have learned and advice I would give after living with MS for the last few years.

You become a constant scientific experiment

Most people get diagnosed with MS between the ages of 20 and 40. I was only fifteen, and whilst it has become more common since I was diagnosed in 2013 for children and teenagers to receive an MS diagnosis, at the time it was pretty rare, with only 2.5-5% of MS cases occurring in people nineteen years old or under. Because of this, and the fact that there is no cure for MS yet, because there is still uncertainty about what exactly causes it, my doctors kept asking if I wanted to be involved in this research or that research, and still do now. Your new diagnosis is super helpful to specialists who are recruiting for studies or medical trials.

Part of me just wants to live my life. Part of me doesn’t want to fill out this form, do

this interview, try this new medication, or keep going back to the hospital for appointments and check ups. However, the other part of me thinks that in a strange sort of way, I’m very privileged to be a part of all of this. I am not well and won’t be for the rest of my life, which sucks, but if I take part in these trials, then maybe I could be part of the journey to finding a cure for people in the future. So, whilst it is irritating, and I don’t particularly love being treated like a lab rat, I try to use the trials I am invited to as education into the disease which very few people are fortunate enough to have, and I also try to think of it as a way of making history.

Everyone around you suddenly becomes a doctor

I never knew that Sandra next door had a PhD in paediatric neurology until I came home from the hospital as a teenager, and my parents started telling family and friends that I had MS. Or at least, she liked to think she did.

“Have you tried Yoga? Pilates? Do you get enough sleep? Have you tried a gluten

free diet? I heard there’s a sweetener that they put in fizzy drinks which makes your symptoms worse!” These are all suggestions that people have legitimately said to me. Ironically, I have tried most of these things, and by some cruel twist of fate, I still have MS. Another common one is something along the lines of “My daughter’s friend’s grandma’s brother’s auntie’s grandson’s neighbour’s husband’s pet unicorn has MS, and they tried [insert miracle cure here] and it changed their life!”

MS is referred to as a ‘snowflake disease’, meaning that no two cases are the same.

Just because your Auntie Lucy was walking independently well into her seventies doesn’t mean that I will be so lucky. By the same token, just because Mark from across the road is in a wheelchair now after being diagnosed only two years ago, doesn’t mean that I will have the same fate. MS can be unpredictable, and this is hard to deal with, because I want to be able to plan for the future, but that is near enough impossible as I don’t know how progressed my disease will be by then. I tend to make plans which can be flexible, or have a back-up plan in place in case I am not well enough to realise everything I want to do.

The main thing to remember here is that a lot of the time, people who are making

these often crazy suggestions are just trying to help, and they don’t mean any of the offence which they quite often cause. However, it is important to also listen to your doctors and specialists. They are the real experts, and they will do all they can to help you.

Listen to your body

From the day I came home from the hospital, I received advice from pretty much everyone around me to listen to my body. If I felt like something was too much, then I should not push myself. If I felt something strange (MS has a range of symptoms) then I should pay attention to it. With a bit of time, I’d soon get used to knowing what was just a funny turn and what was a potential MS relapse. It is possibly the most useful advice I have ever been given since I found out about my illness.

It did take a few years for me to learn the difference between a generic ache or pain

and something that was the start of my MS worsening. It is important to learn the difference, because if you are too cautious, you’ll be in and out of the doctors every day, but if you dismiss everything you feel, you are only going to make life harder for yourself. There is no cure for MS, but relapses can be treated with steroids, which often means a few days’ stay in the hospital until you start making some improvement. There have been times where I have been tempted to keep plodding on, despite the fact that I can’t see, or am struggling to walk, or have lost sensation down one side of my body. On some occasions, this was the right call, but on others, I just made things worse for myself, because had I gone and got treatment sooner, I would not have disabled myself quite as far as I ended up doing. The long term consequences for this remain to be seen.

If your body tells you to rest, then rest. Everything and everyone else in the world will

just have to wait for you to be better. If your body tells you that you are OK to keep going for a few days and see how you feel, then sure, give it a go. But that internal communication is a vital skill; just don’t expect it to happen overnight.

The learning curve never stops

Life in general is a learning curve, right? Even the oldest and wisest people I know would admit they still had things to learn, or things they wish they had learned. The same goes for a lifelong condition.

It’s not a case of one day not knowing anything about the condition you have just

been diagnosed with, doing some reading of the leaflets they gave you at the hospital, and waking up an expert. There is a lot to get your head around, and a lot of adjustments to make in the sense that your body now works a little differently to how you thought it did before. Give it time.

I have had MS for nearly a third of my life. I try to keep up to date with new treatment

options, and things that come up in the news. I do a lot of reading up on the condition - not just because I live with it, but also because I genuinely find it interesting. However I will still find an article about a little niggling symptom I’ve experienced for most of my life, thinking it was just one of those things, to find out that it can indeed be linked to MS. I still get new symptoms every now and then, which I have never had anything similar to before.

I suppose I am kind of knowledgeable about MS, but I am by no means an expert.

Also, the science is constantly changing, so even if someone could read every paper ever written on MS, there would have been a whole new range of studies published by the time they had finished. My eyes are very much open to the fact that I still have a tremendous amount to learn.

People might treat you differently

Some people will feel sorry for you, and make that known. Some people might think you’re making a huge deal out of nothing, because at least you’re not dying, right? It could have been worse. And some people will struggle with the news of your diagnosis, maybe even more than you did.

I remember having a conversation quite well with my mother. I had found out about

my MS four days prior to it. We used to sing in a choir together, and I had wanted to carry on as normally as possible, so we went. I remember the choir master giving me a pretty wide berth that evening, and I was upset by that.

“He will just be struggling with it,” Mam told me. “He won’t know what to say.”

I was offended even further. He was in his sixties and I was a fifteen year old girl. I

didn’t see why he should be the one struggling with my diagnosis, when I was the one who was living with it. I remember having an argument with my father about that, because he used to use my illness as a sympathy card. I remember screaming at him, “You think they feel sorry for you, but they don’t. They feel sorry for me.”

So yes, people’s attitudes towards you may change. People might use your disability

as something interesting or unique about you (it certainly happened to me). Some people might see you as a write-off, but then that is always going to be their problem, not yours. Thankfully I’ve not encountered many of them at all.

You’re too young to be disabled

Of course, you have to be an octogenarian to feel any pain or need help walking. I’ve been out and about, using my walking frame, and received glares from other people who are also using a frame, as if I was making this whole thing up? I really don’t understand. There is nothing ‘cool’ about not being able to walk properly. I am in a lot of pain, and sometimes I need a little help to get me from A to B in my daily life.

Once I was going into the toilets at the place I work (the disabled one was in use and

I was desperate) and I held the door open for someone. She looked down at my walker, which I call Johnnie - Hans Zimmer stays at home - and joked, “That’s cheating!” I was twenty years old. Is needing a walker to, heaven forbid, walk, really considered cheating these days?

I think it is a foreign concept, both to people our own age and those older than us,

that we can have pain or disabilities even though we are still young. The best thing to do is try to ignore this. Take whatever measures you need to in order to allow you to function as closely to an able-bodied person as you can. It’s nobody else’s business, as much as I’m sure they would love to make it so. You’re not an imposter, no matter how many times you are told otherwise. The pain, the struggle, and the disability, it’s all terrifyingly real, and you truly are a warrior to face that every single day.

Most people will be willing to help

Despite the minority spoiling things for everyone, as is so often the case in several regards, I have learned, to my pleasant surprise, that a good number of people will be there to help you if you need it. I’ve had checkout workers pack my shopping for me without me asking, rail workers asking if I need help getting on and off the train, and most of the time, if I have my frame with me, someone will give up their seat on the bus for me without a second thought. This is not so much the case when I don’t have my frame, but then in these times, I am normally OK to stand for long enough without any problems. This isn’t the case for other people, so I guess I am lucky in that respect.

Kindness does exist, and I think it’s such a shame that people are scared of being

disabled. I think society is slowly edging towards being more accepting of people who are different from the socially constructed norm. Can I speak for everyone when I say that help is there when you need it? Of course not, but in my own personal experience, I have been lucky to receive help when I’ve needed it. On the rare occasion nobody stood for me on the bus, it was funny to watch them all glare at me because me and my walking frame were in the way of the aisle. Once on the train there were no seats so I took my frame and sat on the floor by one of the doors. A woman frowned at me but I ignored her because I wasn’t quite sure what else she expected me to do. You learn to develop a thick skin to this sort of thing.

Asking for help doesn’t make you weak. If anything, it shows that you are strong. And

even if the first person you ask says no, I’m sure that if you have the perseverance to keep asking, someone will understand the whole ‘not all disabilities are visible’ thing. It shouldn’t be that way, but one step at a time. Hopefully one day it won’t be the case. Hopefully one day, we won’t even need to ask.

Look after your mental health

As well as MS, I have problems with my mental health. I was diagnosed with depression and anxiety when I was thirteen, so before my MS was known, and I was diagnosed again with borderline personality disorder when I was eighteen. One thing I have learned is that my MS is so much easier to deal with when I am of sound mind, even if my physical symptoms are getting worse.

I have a little saying which is “With the right frame of mind, you can face anything,

even if you can’t overcome it.” That is applicable here. I missed Freshers week during my first year at university because I was in hospital with my worst relapse to date, which is when I first started using my walker. I was already nervous about starting university, and I had this image in my head of everyone meeting their lifelong friends during the first week which I had missed, so I would already be an outsider. The fact I would be an outsider who was also disabled didn’t help my confidence!

However, I made the decision that I would go into the lecture theatre on

my first day, tell people I had MS if they asked but wouldn’t if they didn’t, and I was going to act as if I could walk normally. I was going to own it, because I told myself that nobody was going to like me if I was feeling too sorry for myself. There is a time and a place for that, of course, but I didn’t want to start things off by being miserable. This is a mistake I have learned from in the past.

Taking a mental rest is just as important as taking physical rest. Don’t bombard

yourself. Lifelong conditions or impairments are a lot to deal with. Be kind to yourself and others. Show yourself compassion. Try to do healthy coping strategies to make your life easier, and pay as much attention to your mental health as you do to your physical, because both are needed to function efficiently.

Finding it hard is different from giving up

Everyone finds life difficult from time to time, even people who seem to have easy, care-free lives. It’s only human, and struggling does not mean defeat by any means.

People in the disabled community have a lot of problems that able-bodied people do

not, and often mental health problems come as a side effect of that. It would be unnatural to not find it hard from time to time, or wish that you were in better health than you perhaps are. Who, after all, wishes for more suffering to be inflicted upon them?

Nobody can reasonably expect you to be upbeat and positive all the time. We all

experience bad days, and that doesn’t change just because you are disabled now and people look up to you as some sort of inspiration. Giving up is much more permanent. And I’m sure others will try to shame you for having a brief lapse of negativity, by telling you “Don’t give up!” But they probably don’t understand. Nobody knows the battles inside your own head and your own body as well as you do.

You’re stronger than you think

I don’t say a lot of good things about myself. People tell me I should do more because I’m not as bad as I say I am. But one compliment I will give myself is that I handled having MS a lot better than I thought I would. Sure, I’ve cried, I’ve screamed, I’ve complained, and some days I’ve wondered what the point is in even trying. Despite that, though, I still get myself out of bed every day, even when I ache right down to my bones, or my legs are too heavy to move on their own.

Am I a fighter? I wouldn’t go that far. All I know is that I’m trying. I found a strength

within me that I didn’t know was there. Before I got MS I was scared of needles, and felt alienated in hospital settings. These days, I’m the one who goes with a friend to A&E to help them feel less alone, because it is second nature to me now.

I don’t know if I will manage to do all the things I wanted to as a little girl. I don’t know

if I will walk down the aisle at my wedding, or if I will be able to raise a family the way I wanted to. That would hurt so badly, because they are both dreams I’ve had for such a long time. But I’ll cry, and maybe I’ll lash out, but I will get over it. As Bear Grylls says: we improvise, we adapt, and we overcome. That is the way forward.

So, that is about it. If there are things in here that you disagree with, then that is completely OK! As I said at the start, I can only really speak for my own experience, and this is all the truth through my eyes. I hope it has at least given someone who reads this some clarity, and an insight as to how my life has been changed by my condition.