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The Journey to Finding Acceptance

April 4, 2024 • 3 min read
The Journey to Finding Acceptance
Krystel El Koussa a survécu à une maladie rare appelée flocon de neige. Montréal, 6 février 2024. PIERRE-PAUL POULIN/LE JOURNAL DE MONTRÉAL/AGENCE QMI. Photo credits: MédiaQMI inc.

This part of my life is called finding acceptance and moving forward:  

My name is Krystel El Koussa. I’m a 27-year-old filmmaker, and I LOVE LIFE! However, at 26, I got a diagnosis that changed my life. I am a Myasthenia Gravis Warrior. Here’s how I found acceptance and why I started sharing my story:
I was a normal person, living a healthy life here in Montreal, when I got diagnosed. It was a horrible shock for me, especially since I live alone and my family is in Lebanon. Did I want to be diagnosed with a chronic illness or an open-chest surgery at 26? Of course not. Nobody would want that. But did I have a choice? NO. The only thing I can do is be grateful that I finally had a diagnosis and treatment after months of suffering. I am thankful I have medical follow-ups and a new perception of life and myself!
About six months post-op and diagnosis, when things started to calm down in my life and the treatment was effective, I wrote a paragraph sharing my story to the world on social media, along with a short reel about how my life was pre-diagnosis. I wrote that after being silent for a while. This wasn’t easy to do, especially with all of the side effects of my medications. It took a lot of courage, but I decided to be completely open, honest, and vulnerable.
I wanted people who are perfectly healthy to realize that they have everything!  And I wanted people who are chronically ill to know that it’s nothing to be ashamed of; it doesn’t need to be hidden. We didn’t choose this life. The truth is life will always be full of ups and downs. I didn’t want to stay stuck in my place, so I accepted it and moved forward.
A woman in a hospital gown is seated in a bed, connected to medical monitoring equipment, with a slight smile on her face. The environment suggests she is in a hospital room or ICU, with various machines and cables visible in the background.

When I first shared my story, I shared it for myself.

It was liberating. I felt increasingly confident and comfortable when I went out, knowing that most of my surroundings were aware of my health condition. I had no idea that it would connect me with a lot of people who have MG or another chronic illness but feel alone in their journey. Some are unable to talk about their chronic disease with others or even don’t feel ready for it. Some have even given up hope… I know how hard it is to have an incurable illness. What I wrote made them feel heard and seen, and they related to it. And I get that. I was surprised with how many people it resonated with! I’ve always liked writing, and I guess I’m pretty good at it, right?
I now call these warriors friends. We understand each other and look out for each other. On bad days, we give each other hope. On good days, we’re happy for each other. We’re all fighting the same battle. After that, I started looking at the bright side.
I know it’s so much easier said than done, but the way I look at it is this way: at least I  have a treatment; things could be so much worse. My MG crisis could have taken my life, but I’m here, fighting it with grace and courage. Today, I am very open about my illness and my health journey. I went from being  “ashamed” to go out to speaking about it in public and advocating for myself and others who feel the same way. Of course, it still gets so hard at times, and I just want it all to stop, but I won’t give up. I’ve come a long way in my journey.
I also encourage my warrior friends to do the same. They became part of my journey just as I am part of theirs. This might be your sign to share your story or connect with others who have Myasthenia Gravis, too! Fighting cancer and this disease taught me so much in a short period of time.
And as I always say: TO BE CONTINUED. My story isn’t over yet. Follow Krystel on Instagram to learn more about her journey.
You can also share your story with us at info@patientaccess.org.

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