Finding my voice through Marfan Syndrome

 In Adults, Chronic Illness, Emotional Impacts

My life with Marfan Syndrome has been incredibly challenging, to say the least. But do you know has been one the amazing things for me? I’m finding my voice through Marfan Syndrome. Fighting a chronic health condition on a daily basis is mentally and physically exhausting; but if I were to talk only about the negatives, I’d be typing all week long. Where is that going to get us? Nowhere!

Finding my voice through Marfan Syndrome | Hypermobility Connect

So today, I’m writing about Marfan Syndrome in a more positive light. I may not have had the same, equal opportunities as every other “healthy” person in life, but what I have achieved through Marfan Syndrome is much more meaningful to me than anything I could ever have achieved as a “typical” person.


Strange really, considering it held me back for so long.


With my long, clawing, freakishly stretchy MarFingers (Marfan Fingers) that I once loathed for being so weak and wobbly, I turned my hand to writing and became an enthusiastic blogger – I’m finding my voice through Marfan Syndrome. An ability which would have remained undiscovered if it wasn’t for my rare health condition.


I often think I could have landed myself a job as a Hairdresser, or a shop assistant, for example, if health issues didn’t plague me. But then I wouldn’t be sitting here now, with heartfelt words pouring out of my soul with Marfan Syndrome influencing every one of them. And I certainly wouldn’t have established my strong love of writing.


Through Marfan Syndrome and all its comorbidities, I became a Volunteer Blogger and a deep-thinking writer. I have found that there was a purpose for my pain after all, and in the midst of my anguish and suffering, I found it. I found my voice, and the gift I can give the world. In my previous post, I talked about how I wanted to give the ‘young me’, the girl who got so lost in her suffering, a voice. And that is what I am doing.


It’s cliched to say that every struggle has a silver lining, but perhaps its true? I’ve been reflecting on some of my Marfan Syndrome positives, the things I wouldn’t have achieved/done/become if it wasn’t for my rare diagnosis:

    • I’m now a Volunteer Blogger for two charities that mean a lot to me.
    • People all around the globe have shared my blog posts.
    • In 2016, I received over 15,000 views in less than a month for writing about my Marfan Syndrome Journey.
    • The Marfan Foundation have shared my posts with their 18,000 followers!
    • Marfan Syndrome led me to write, which I believe it my talent.
    • Professional Writers have contacted me to compliment my writing skills! (Not that I feel like I have any)
    • I found a Chronic Illness Blogging Group, full of lovely, friendly people.

I could go on, but I won’t bore you. So I’ll leave you with this quote:


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