Living With An Untold Diagnosis

Up until last year I had kept very quiet about my Marfan syndrome diagnosis since I was 16 years old, it remained unrevealed to almost everyone (including some family members) I kept it to myself because I didn't want to be seen as different, which was already something I felt & I didn't want to be known as the girl with a rare disease as well. My Mum knew I had the condition as she was always with me at my hospital appointments but I very rarely engaged in conversation with her about it as I didn't want to acknowledge the matter. As the years passed, my rare health condition remained a secret & I'd be lying if I said the burden wasn't heavy at times. Carrying it around with me weighed me down & sometimes I wanted to share my worries, I wanted to tell someone that I was struggling to accept the diagnosis I'd been given, but I'd hidden it for so long that I didn't know how to open up about it. That doesn't mean Marfan syndrome wasn't always on my mind though. 

I can't really tell you how it felt to keep such a troubling revelation to myself for that long because I tried not to pay attention to my feelings regarding the situation. What I can tell you though is that I strongly regret handling it that way. Keeping it locked inside myself & never speaking up about it to anyone was damaging to my emotional health & harmful to my phsycological well-being. It has had a negative impact on my life and I now suffer from Anxiety Disorder & need to see a therapist. Keeping my rare diagnosis quiet has caused some distress to my thoughts and feelings and I don't know if that can be repaired, if it can, I think it will take a long time. 

I realise that I could've avoided the situation I'm in now if I had spoken up sooner & asked for help, but I often wonder why I wasn't offered any form of councelling when I was first diagnosed, I was a 16 year old girl who was already in a fragile state due to a major operation that I'd had to have a couple of years earlier. I think that should've given them an idea that I might've needed a bit of extra support. I can't change the way I dealt with all this from the start, but I can decide to deal with it better in the future, which is what I plan to do from now on. 

By posting this blog, I hope I've managed to help some people who might be in a similar position. I hope they read this and realise that it's not wise to bury something serious like I did, it had consequences for me & I wouldn't want anyone else to have the regret of not speaking out sooner. 
An Image Off Google That Pretty Much Describes What I've Been Trying To Say In This Blog.


I'm finally getting around to writing this blog. I've been trying to plan it for a few weeks now but because I already wrote a blog based on my Marfan experience back in November, I didn't really know what to say. I don't want to bore you all by repeating everything lol. But now that Marfan Syndrome Awareness Month is here, I wanted to take the chance to bring up the subject again even if I don't have much to say, as anything is worth posting if it mentions Marfan Syndrome. 

Up until last year, I've always kept quiet about my Marfan Syndrome diagnosis because I was too embarrassed to admit that my chronic health problems were the result of a rare and serious disorder, I felt different enough as it was, and the thought of people knowing I had Marfan Syndrome made me feel ever more outcasted, so, apart from family, I never told anyone, which is why it was such a big deal to me when I finally started opening up. 

My determination to speak out came from my annoyance at how under recognised Marfan Syndrome actually is. In my own small way I'm trying to change that by spreading the word across the internet. I don't do it for attention or sympathy reasons, I do it because I am living with a very rare & serious health condition that needs to be brought into the limelight & given the acknowledgement that it deserves. 

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many ...