My story

Diagnosed with MS

It’s not that I’m a total smartass, but it’s clear to me that the words that come from the doctor’s side of the desk, “You have multiple sclerosis,” aren’t easy to digest.

Every reaction is a normal reaction

Getting diagnosed with a new chronic illness kicks off our defence mechanisms. We suddenly experience unpleasant feelings completely unknown to us, and our reactions are totally different than in other situations. And when it comes to this chronic illness … No reaction is wrong reaction (“Just don’t go on a murder spree.”). After the first shock (or not), we can develop denial. Disbelief. Apathy. Sign our own death sentence. We give in to depression, an enduring anger. We keep asking ourselves: “Why me?” We may also feel relief finding that our symptoms are really not made up. You finally have a name for what’s going on – a name for it. The name of the nemesis you can now fight. But isn’t it uncurable? It may be, but you can always fight for “the good life”. For better quality of life. For general well-being, social security, social inclusion.

You can always fight for “the good life”.

It’s going to be 15 years since I got diagnosed. Me, a teenage girl with black hair and black make-up around grey-blue eyes, wearing all black, of course. According to my lumbar puncture results I have the following condition: demyelinating disease. WTF does that even mean? Mister Google wasn’t as wise as he is today. I wasn’t even able to type the phrase in the search bar correctly. There were only two results. After some more clicking I discovered the term “multiple sclerosis”. Excited that I finally found something, I went to my mother and said excitedly: “Mom, I have multiple sclerosis!”. She just nodded unsurely and I could catch a hint of fear in her eyes (“Not exactly the words you’d ever want to hear from your daughter, are they?”).

Do the research

Later on, I googled “multiple sclerosis” and got more results. Some forums, descriptions of the disease …; “ok, it’s an advancing one, maybe you’re going to end up on a wheelchair, but you’re not going to die from it”. Browsing the web reminded me of a commercial that had been playing on the television a couple of years earlier: two actresses – a young woman and an old lady were sitting on the porch, chatting and laughing like any other day. There was a stick leaning on the table, and as a viewer one’d think it belongs to the old lady. But no; when saying goodbye, it was the young woman who took it. A pretty powerful commercial, wouldn’t you agree? I admit I have a somewhat blurry memory of this period in my life, but thinking of it now, the fact is that I obviously accepted my “new normal” more calmly than I could have (ever) imagined. The next day, I went to school with the usual smile on my face.

The next day, I went to school with the usual smile on my face.

Keep going

I’m not sure how I was able to cope with my diagnosis the way I did (“Well you didn’t cope with it at all!”). My mild reaction was probably a result of indifference that can be felt only in adolescence. Looking naively into the future, like it is so far away (“Look at you now, living that future!”) Back then, all it mattered was my teenage freedom. I kept living a normal life. With the support from my family, friends and schoolmates, I was doing everything what an 18-year old girl was supposed to be doing, but perhaps in a slightly different style:

  • If I wasn’t able to walk long distances, I grabbed the first elbow that walked past me. (“Is this carelessness?”)
  • If I went on a night out with my friends and was too tired to dance, I quickly got a chair under my ass. (“Is this spoiling?”)
  • When I was afraid to go to the dancing class for my prom because I didn’t trust anyone with my clumsy dancing skills, I asked a friend to be my dancing partner. (“With whom I fell in love later. And kept him to this day – is this possessiveness?”)
  • If I couldn’t walk up the stairs, I went for an IV with steroids. And then for another one and another one … (“Is this drug addiction!?”)

Ok, let’s be serious.

Relapsing-remitting multiple sclerosis: the name itself says it all – it comes with relapses and remissions. Such specific nature of this disease made me believe that life with multiple sclerosis is … well, is actually not that hard as long as I feel better after a shot of steroids. As long as I can still enjoy life with road trips across Europe and shamelessly show off my stumblebum dancing moves at rock festivals (after a nerve-wrecking examination period) – as long as I can do all of these things, everything is alright.

 As long as I can still enjoy life with road trips across Europe and shamelessly show off my stumblebum dancing moves at rock festivals – everything is all right.

Surround yourself with positive people

When I started studying at the university, I began using a more conscious approach to coping with my illness. My desire to work in the field of Educational Studies seemed to fit perfectly into my new normal; I obtained all the possible knowledge of social sciences and applied it to my situation. But discovering different facts about life with chronic illness also led to more and more fears, inner conflicts and identity crises. It made me think a lot about future (“Well, this is the future you live in now!”). My process of coping was definitely long and slow, but I can’t say it was brutal. From thinking naively at first to just letting it be, from falling hard to the ground over and over again (literally and metaphorically) to being completely confused and stressed-out. But in the midst of all the turbulence caused by the disease there was something very still: the people around me.

My life would never be so positive and fulfilling if I didn’t have the incredible support from human beings close to me. Without them, I would never have so much fun and experience so many crazy things. Without them, I would never ski again, I would have never seen the world I’ve seen, I would never wander around European cities. And I would definitely never be confident enough to talk so openly about my feelings.

Love yourself 

Yes, we have managed to live through some stormy years of searching for my true self – me and my MS. I like myself now. I like myself because I can talk about “us” openly. Because I can accept my feelings no matter what they are. Because I have accepted my disease but don’t allow it to get to me. I like myself because I want to always know more about it and because I am living the words “Knowledge is power”. I happily share my knowledge about MS and its invisible symptoms with everyone, whether they want to hear it or not. I like myself because I know how to live a full and active life despite the obstacles that come with MS. I’m taking control over all the things I can control – what I eat, what I do for my health, who I spend my time with etc.

Bearing all this in mind, it’s important to remember there will be always ups and downs in life. The process of coping never ends. Just like MS will never leave me. Oh, how I wish it would! But hope dies last, and what matters is to never give up.

I have accepted my disease but don’t allow it to get to me.

Take care.

Leave a Reply

Your email address will not be published. Required fields are marked *