And suddenly you are a…patient advocate!

Pilot – Introduction

Once upon a time, there was this young woman who got diagnosed with an incurable disease called multiple sclerosis and it changed her world – and herself. And when she suddenly saw the injustice and the lack of understanding, empathy and the growing isolation of others in similar situations – she got angry and decided to start laying stones for social change, acceptance and connection. That woman was me and this is my story. 🙂

You know the days when you were a kid and you would imagine what life would be like when you are all grown up – what freedom you would have! Oh dear, you could go to bed whenever you would like – no matter how late; all the fun stuff adults were supposedly allowed to do. Or the house you would live in and you would work – preferably as a superhero or doing something artistic. The endless possibilities. While growing up, we learn that things may not always be as rosy as imagined but we do still have free choice and on a certain level the independence we craved as little ones. I am a people person – I see the potential and the good in others – and I always thought I would end up working in an HR role or become a psychotherapist, but the universe had other plans in store for me.

In October 2015, all the hints that my body had given me over the years were not a whisper anymore – I guess the stress of taking on a new job in spring was a tad too much combined with the long commutes daily. It all started with numbness which just did not go away – of course I was freaked out, but this was nothing against what followed. As I said, the universe had other plans for me – and although, those plans would turn out to be terrifying I still had a guardian angel watching over me. How could it otherwise be explained that my first major relapse happened in a restaurant and magically a nurse which specialised in epilepsy was on the spot. No, I do not believe in coincidences.

Anyway, fast forward to October 2016 – I had been contemplating for a year if I really had multiple sclerosis. I mean they said there would be a possibility a year earlier. So basically, I made a follow-up appointment with a neurologist but from the look on his face when we first met, it was pretty much clear that it was not a mere assumption but a 90% certain diagnosis. 3 weeks later, my face went numb. “I can’t feel my face” was a hit song at the time… Well played Universe – To me, it was kind of funny in a certain sense because of the timing and absurdity of the situation I found myself in. I guess, we sometimes need to find a bit of humour in the little things to help us through life’s challenges.

After the MRI (a brain scan) results, my diagnosis was confirmed. I was 29 – and quite shattered. Imagine someone telling you that you will forever be sick, that you have an unpredictable illness for which there is no cure and you can have a myriad of symptoms or none at all. Geeze, I ain’t got no time for this *insert the sass here*. Little did I know what would happen in the following three years…and that, for me, even a life changing diagnosis would be a steppingstone into a meaningful life, rich in experiences and connections.

I came to ask myself: What if there was a possibility of understanding and less isolation? What if I were not alone to deal with this – if there were others like me? An event called MS Sessions should reveal what this could mean… I’ll tell you more about me being a patient advocate and the different events in my coming blogposts so stay tuned to find out more! 😉

Disclaimer:  Within this and my future articles you may be confronted with chronic illness language: terms you may not be familiar with at first, but you I promise I’ll explain them to the best of my knowledge. As you were able to understand from my article above, I am affected by multiple sclerosis, a degenerative progressive neurological condition (meaning it touches the brain and spinal cord – exerting influence over the whole body and can thus have a range of symptoms). MS or multiple sclerosis is the number one condition responsible for disability in the young adult. There are two main categories:

  • relapsing-remitting (my disease form) where you go through periods where you get worse, that is to say you have new or worsening symptoms (relapse) and then later regain ability (remission), hence relapse-remitting. This form transgresses over time until you arrive at a place where your body cannot compensate for the lost neurological functions called secondary progressive MS;
  • and then there is progressive MS where symptoms get worse over time without recovery periods.
Susanna van Tonder

Susanna van Tonder

Susanna van Tonder is a prominent figure within the patient community (national and international) where she fulfils various roles within charities whilst raising awareness and advocating for the right of people with disabilities. She pursued her studies in social sciences. Her peak interest in health, social justice and social engagement was caused by her own multiple sclerosis diagnosis and since then she has won a youth reward for her advocacy work, has been present at several events at the European Parliament and featured in newspaper articles. In Luxembourg, she is a part of the board of Multiple Sclérose Lëtzebuerg. In addition, she joined the Higher Council for People with Disabilities in Luxembourg in 2019.

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