Monday, 13 June 2016

If I didn't have Marfan Syndrome, I wouldn't have...

When I talk about my genetic condition Marfan Syndrome I often speak about the negative side of it and all the trouble and pain it has caused me, however believe it or not there are some positive sides to it. Sometimes it is difficult to focus on the positives when times are tough, after getting some not so great health news recently though I've been trying my best to see things differently. So, today instead of saying bad things about Marfan I'm going to tell you about a few of the good things that have happened because of it.

Marfan Syndrome Rare Genetic Condition Hypermobility Syndrome


1. My boyfriend
I don't think I've ever told the story of how me and my boyfriend met but basically it was all because of Marfan Syndrome. We both have the condition and met in a FB support group for those with it and just hit it off. He lives 3 hours away so we knew it was never going to be easy but one and a half years on we are going strong and fighting everything that Marfan throws at us together. If I didn't have this condition then I never would have met him and he is most definitely one of the best things that has ever happened to me.

2. My closest friends
I had to leave school just 3 months into starting sixth form because of my health and as a result my current friends at the time didn't really want to know me anymore, my health problems kind of scared them away a bit. At the same time though I entered into this new online community of people who were in the same position as me, I found out what a spoonie was and connected with others. Now most of my closest friends are also spoonies, they understand what day to day life is like and help support me through the bad days. I'm especially thankful to have Sarah from Sarah in Wonderland in my life, I can't even begin to explain how amazing she has been to me. She makes me laugh, keeps me smiling and encourages me so much, thank you Sarah.

3. Volunteering
I don't think I've ever mentioned this before but I'm on the social media team for the HMSA (Hypermobility Syndrome Association), they are a charity who supports people with a hypermobility syndrome like Marfan, EDS, OI etc. I wrote an article about my experience with Marfan for their journal/magazine and then not long after I officially became a volunteer, I help out with social media and anything Marfan related. I feel like I have a purpose now, at some point having my blog just became not enough to keep me busy on my good days so volunteering with them means I get bored a lot less. I'm also helping to raise awareness of Marfan and other conditions as well which is always good!

4. Resilience
Having a rare long term genetic condition that affects you every day of your life is tough but it teaches you a few things. I've become stronger because of it and I've been through things that 5 years ago I never would have thought I could. Of course I have my good days and my bad days but I refuse to give up and I try and handle everything that is thrown at me.

Of course I don't enjoy the pain, surgeries, hospital appointments etc. but I know that if I didn't have this condition then I would be a completely different person and I really quite like who I am right now!
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4 comments

  1. It's great to see a post showing the positives; especially if a younger person or someone who'd just been diagnosed were to read this :) x

    Holly ∣ Closingwinter

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    1. I didn't even think of it like this, I really hope it does help anyone who has been recently diagnosed! xx

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  2. It sucks having lupus, but like you said, with every negative thing there is always something good that comes out of it. I used to have seizures that prevented me from driving, but I really wanted an internship while I was in school and I made it to the last round of interviews but didn't get the internship. Plus it would've been hard because I wasn't driving. But if I was driving and did get that internship, I wouldn't have gotten my dog, who I adopted weeks after the interview, and I just love him so so much

    Hannah
    Floraful

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    1. Aw that's so lovely! I think it is good sometimes to just look at the bigger picture, right now things might be bad but good things could happen because of it, maybe not tomorrow or even next week but at some point xx

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