Life in Lockdown with Marfan Syndrome

By Laura Smith

As someone with Marfan syndrome and as a previous contributor to this blog, I wanted to write something useful about what life has been like in lockdown during the coronavirus pandemic.

However, I’ve found it really tricky, because every day is so different… I think like a lot of people I’ve felt so many emotions during this time, including, but certainly not limited to the following.

Shocked
Though we’d heard a lot about coronavirus from January, suddenly being put in to lockdown came as a real shock.
 
I don’t think I quite believed that it would actually happen. I’m also fiercely optimistic so I was clinging on to the hope that it wouldn’t be that bad.
 
With a three year old now at home full time and trying to juggle work, it almost seemed impossible.
 
Scared
I think when the shock subsided then the overwhelming emotion became fear. Fear for loved ones, fear for the world, fear of the unknown.
 
Having Marfan syndrome, and more importantly having a 3 year old also with the condition, I suddenly became hyper-vigilant.
 
When we lost an extended family member to coronavirus, fear turned to sadness, not just for our family, but for everyone who has lost someone during the pandemic.
 
Overwhelmed
As death rates climbed I think it all suddenly became overwhelming. I’d been consuming every piece of news I could, looking for positive signs, but I realised it wasn’t good for my mental health.
 
As a parent of a child with Marfan syndrome I felt vulnerable, as the impact of coronavirus on someone with our condition still feels quite unknown.
 
Happy
In and amongst the chaos of the past ten weeks (or however long it has been!), there have been moments of real joy.
 
I’ve found happiness in slowing down a little and not rushing from one thing to another. It has definitely made me focus on my own health more.
 
My son has also loved the time spent at home, even if mummy is always telling him “just give me one second”!
 
Hopeful
Though there is a long road to go and so much overwhelming loss there has also been hope, and there continues to be.
 
Eventually this pandemic will subside (or hopefully end!) and we’ll be faced with a new world. It might not look how it looked before, but it will be ours to make of it what we can.
 
How have you found lockdown? Has it made you more conscious of your condition? Have you had the virus?
 
I’d love to know!
 

ABOUT LAURA SMITH

“My dad always made me feel like having Marfan syndrome made you part of a special club!” - Laura Smith

Laura Smith is a writer living in Halifax, West Yorkshire with her husband Dave and son Jude. She has grown up knowing she has Marfan syndrome. She spends her days hunting for the tall range in clothing stores and writing nice words for greeting cards. E: [email protected]:.

Please note that the views expressed in this article are those of its author. The Marfan Trust is not responsible for the medical content of comments posted by others on these blog pages. If you have specific medical queries, please email [email protected]