Dear Marfan Syndrome

Dear Marfan Syndrome,

Growing up you were just an odd word I sometimes heard whilst I spun around on a doctors office chair. You were the pain and swelling in my knees whilst I struggled to keep up in PE. You were the reason I spent some of my lessons at school in the library as you made the three flights of stairs too difficult to climb. You were just an annoyance, something that got in the way every now and then. I could cope with that.

But then you became something more. Suddenly you were the curve in my spine, making me self conscious about how my body looked. You were the pain in my back as I walked to lessons. The aches as I struggled to sit up all day. You made me spend more and more time in the library, doing worksheets on my own, slowly becoming increasingly isolated.

Then you were my frustration as I had to push through pain just to complete my GCSE exams. The fear that struck me in the weeks and days before my spinal fusion surgery that followed soon after. The tears that fell from my face as the pain set in post op, the agony as nurses turned me in the night. I was angry and my mind was cluttered with thoughts of 'why me.'

Despite all that, after surgery you were my optimism, I felt like I had won the battle against you and we could live in harmony again. Those thoughts didn't last too long though, you didn't like my new outlook on life, you were relentless and new problems and symptoms popped up all the time.

You were every new diagnosis, every hospital appointment, every operation and every feeling from relief to distress. You were the happiness that followed positive news and the nights of crying in bed that came after disappointing and painful news.

But you are also my strength and my passion to support others. The energy that I throw into raising awareness and every comment I get from someone thanking me for sharing my story. You've shaped me into the person I am today. Without you I wouldn't have met my closest friends and some of the most caring people I have ever known in the spoonie community.

I don't know who I would be without you or what my life would look like. I wouldn't miss the pain, the operations, endless appointments and treatments but I would miss who I am because of all that. I will never fully understand you or why these things happen but that's okay because in the end I will always be strong enough to handle whatever you throw at me.


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