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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.


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