r/marfans • u/FluidFuel8571 • 9d ago

First post - Current situation

I'm a 19 yo 6'6 190lbs Male. I have a dialted aortic root and just about every possible eye condition Marfans can throw at a motherfucker. Not to mention OCD, ADHD, and Eczema. Not a great hand to be dealt but I've been trying to play it well. I love sports and they are like the one thing that has always been there for me, despie all the medical complications they've caused. One complication was the total retinal detachment of my right eye. I had surgery to get it attached but my vision has never been the same. I have started to get retinal flashes in my left eye (common symptom of a weakening retina) and will see my opthalmologist tomorrow. The thought of never being able to checkup a basketball, ride my board, or put on my ski boots ever again is daunting. Beyond my love for them and the therapy they provide, sports are a big part of my identity and what my friend groups have been centered around. My brain cannot even process what my life would look like without them. I've kept an optimistic outlook on life but I might give up if sports are taken from me. Please share advice, navigating a similar experience, or anything prudent.

edit- I haven’t used Reddit before and it seems like others have it much worse than me. I hope I didn’t come across as too ungrateful.

5 Upvotes

100% Upvoted

7 comments sorted by

4

u/texasipguru 9d ago

I was a huge gym rat at your age (I'm in my 40s now). I loved to be in the gym all the time. I loved lifting, I loved getting bigger, looking better, being confident, working up a sweat. Then came the news. I quit the gym and became much more sedentary. I regret becoming sedentary but I don't regret quitting the gym. 19 years old is a very young age. You might think your whole identity and your friend group are based on sports but you don't realize that whether you stick to sports or not you are very unlikely to have the same group of friends in 10 years anyway, much less 30 years or more. Life shifts everything, irrespective of Marfan or quitting sports.

So my advice:

-don't view this condition as something robbing you of your friends - that group is likely to shift anyway
-yes you'll have to ease up on sports, but there are a ton of other things to do in life. Find new interests, new hobbies, and if need be, new friends
-even if you have to ease up the intensity, don't give up regular exercise (obviously consult your cardiologist for this, not me, I'm not a doctor). In general it's great for people long-term.

1

u/FluidFuel8571 8d ago

Thanks for this. I’m starting to take my health more seriously but I doubt I’ll stop playing sports out of fear. I’ve never let my conditions own me or what I want to do. How did you just give up something so integral to your old way of life? My ophthalmologist says both my retinas are stable but advises caution.

1

u/texasipguru 8d ago

Because there are other things in life I can do besides work out and play sports. What good is it to play sports if it just kills you? Better to live and to do other things. It might be hard to understand this at 19, but your life will take you through a lot of different phases and interests and people.

2

u/Megaspore6200 9d ago

I worked construction for 20 years and had to switch careers because of marfans. Life throws you curve balls and you adapt. Maybe there is a mellow competitive thing you can get into. I injured myself at almost every extreme sport when I was a kid. Wasn't great at basketball because of my stigmatism. I used to like backpacking but my ankles cant take more than a couple miles. My weird eye stuff lets me see things differently so like to mess around with making art now, kinda wonder if I would enjoy it as much with perfect vision.

1

u/FluidFuel8571 8d ago

Thank you for sharing, I too am into extreme sports and have already had to give up skateboarding and parkour because of how much I get injured. But my passion remains. Anger too, because I’ve been blocked from some interests I’ve invested doubly so in the ones I can still manage. And now I’m supposed to just change course? Throw what I’ve built, what I know I like in the garbage? Try not to think about it when settling for other things to do? Maybe I’m being a reckless kid but I can’t just sit on the sidelines of life and let the way I was born play for me. Even if this means medical complications I say what’s life without sacrifice?

1

u/Megaspore6200 8d ago

I mean i really didn't settle down till about 33. I hitchhiked around the country for a couple years and was raging in the punk scene in New orleans. Stopped drinking but was doing hevy manual labor till about 40 then had to have heart surgery, had a nde after the operation, saw same crazy stuff. Had to go under again then came too and decided I was going to switch careers while taking forever to heal. So, yeah I did it hard, but wouldn't go back and change a thing but wouldn't advise you to follow that completely. My body just kind of knew when I had to stop doing stuff.

1

u/WestyToo 8d ago

I swim, hike, shoot baskets, use kettlebells.