r/marfans • u/MenschIsBritish69420 • 11d ago
Rant/Vent Low self-esteem issues
I (29F) was diagnosed at one year old. I’m the only one in my family that has marfans and its very lonely. I’ve had a lot of surgeries (fake monovision so one eye is far the other is near lenses that replaced my drifting natural lenses when i was a kid). I have two titanium rods in my back as i had bad scoliosis as a kid (this was fixed when i was 9).
And I had a pears procedure in 2018, but need a new surgery soon as this bitchy aorta likes to get a bit big. (I’ve had the scans and tests and nothing dangerous showing up, as im on bisoprolol & losartan.)
One of the many things I hate having this condition, is you feel outcasted in everything. I really hate the arachnodactyly (our long fingers & toes) and long ass limbs. I have never interacted with people with my condition, as I have been told they are negative and scare me with like more symptoms etc .
My husband is a normal guy, he understands it and is supportive. Which I love him for, as I’ve heard of stories where relationships don’t work out that well.
But does anyone feel like they are on borrowed time, as it’s unlikely to happen but my biggest fear is dying or going blind. And I just feel like yes it won’t happen (my retinas are always checked and given the all clear and my aorta is stable with the pears. I just have bad body dysphoria, when I look in a mirror it’s all wrong and I just want to see the perks of having this marfan stricken body instead of a laundry list of faults.
TL:DR
How can I calm down and be grateful for my shit body even though it’s caused my body dysphoria like no tomorrow.
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u/desultoryquest 11d ago
I was very self conscious about my body and scoliosis, pectus, being underweight etc as a teen. Now I’m in my 40’s and all the women I’ve been with have barely noticed/been bothered about any of those things.
Everyone is on borrowed time, it’s just that we are more conscious about it. I take comfort in philosophy.
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u/MenschIsBritish69420 11d ago
How did you overcome it? Im almost 30 and still very dysphoric after all these years.
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u/desultoryquest 11d ago
As I had more relationships I realised that my perspective of myself is different from another person’s perspective of me and that beauty is truly subjective. We must own our bodies and love them, why not, that’s all we have.
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u/MenschIsBritish69420 11d ago
Hard to love a body that has a bomb in your chest that in theory can burst at any point, it’s like a toxic relationship but inside you. Sorry for being negative, I just want someone to just get it. As what we deal with ain’t fucking normal you know. I just don’t like having this marfan body, I’d line up for a cure if it was possible and safe. And I’m pretty sure others would as well
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u/desultoryquest 11d ago
Sure, but there is no cure so you have to accept the cards you’ve been dealt with and move on right? It could burst, but it hasn’t so one can be grateful for that.
Everyone has been dealt with certain genes and circumstances which will shape their perspective and life. We have a lot of problems but we also don’t have a lot of other problems. It’s just that the human brain focuses on the problems more than the non-problems. Mindsets can be changed and they matter a lot. Some self reflection is useful
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u/MenschIsBritish69420 11d ago
Yes I understand that, but in my experience I was diagnosed at 1 year old, got severely bullied in my schools because I was weird looking. And before I hit puberty I was put on oestrogen as I was gonna be 6”7! Which for a woman is yikes, but now I’m 5”8 but I’ve tried to live an adult life but things like my aorta is a bit big and I had multiple infections from my PEARS op in 2018 and I got severe ptsd from it. (I still get nightmares from it.) So accepting that I’m a de novo (spontaneous case) after having nothing but near death and severe trauma. For me is very far fetched, I also had my parents check on me every night until I was 18 to make sure I wasn’t dead. (They only stopped because I caught them and got very angry)
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u/desultoryquest 11d ago
Yeah I get it, it’s not easy. Time makes things easier in my experience and I hope you get comfortable with yourself at some point. I’m also a spontaneous mutation, I don’t know anyone else with the condition. But my journey hasn’t been as hard as yours, so definitely not lecturing you. Btw I’m scheduled for PEARS in tow weeks 😅 any tips on making it through?
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u/MenschIsBritish69420 11d ago
When were u diagnosed? I find it odd how people are diagnosed a lot later than me. I guess I just got mega fucked over, sad thing is I cant blame my family just me. Also yeah tips for PEARS, demand to go on antibiotics afterwards, I remember when O woke up breathing felt weird as with open heart surgery you can get surgery induced pneumonia as I got those and wound infection and 2 chest infections after it. Also when u get the PEARS don’t be surprised if the aorta still grows, yeah marfan has a cuckhold on making that aorta get bigger, the PEARS only slows it down. My one just grew 1.2cm since 2018, as I’m due to have either a david or bio bentall procedure soon. Because chronic health anxiety, body dysphoria and complex ptsd was an appetiser apparantly
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u/desultoryquest 11d ago
I was diagnosed around 15, my ENT heard MVP on a routine stethoscope and referred me to a cardiologist. The diagnosis was a relief in a way as I could explain my weird body and stop fighting my genes. Yeah we all seem to have different rates of progression.
Is it the part that’s covered by the pears sieve that’s growing?
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u/MenschIsBritish69420 11d ago
I think it is, i get mixed up on the location. Also make sure the stent isnt expired as my surgeon had to remeasure me as my previous stent expired in storage and the nurses were like ‘oh we put expired pears stents in people all the time.’ And I’m fucking there like, excuse me? How come someone hasnt died? (Turns out it’s just a guideline, if you have a competent surgeon you’ll be fine. My surgeon did the surgery and fucked off for 2 years (medical equivalent of a hit and run). But now I got a much better team of surgeons etc.
(Also apologies for being so blunt, I think the last thing we need is another one of us in severe trouble or dead because of medical neglect.)
But being de novo its fucking cool right? (Not). it’s weird but one thing my husband has noticed is I pick things up weird. Almost like my fingers are chopsticks in a way.→ More replies (0)1
u/Flope 6d ago
Good luck with the PEARS op! Which hospital? I've been putting off scheduling mine.. I'm sure if you posted an update here or on this reddit after your op many people would find it helpful :)
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u/desultoryquest 6d ago
Thanks, I’m doing it in Singapore. National University Hospital. Will certainly post an update.
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u/Flope 6d ago
I actually contacted Singapore and was considering doing it there as well :o sending you good vibes 🔆
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u/Opening_Hearing6007 11d ago
J'avais ca aussi maintenant jai une vie normal ou je m'en fou de deux jai une femme deux enfant et le bonheur de vivre normalement malgré detre restreint sur tout
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u/MenschIsBritish69420 11d ago
I envy that, I really do. I hope your kids dont have it as growing up with it was the cruellest thing.
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u/Opening_Hearing6007 10d ago
Malheureusement il on le marfan avant je ne savais pas qu'il etait possible d'éviter le gene avec une dpi (fiv ) sinon je laurais fait
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u/MenschIsBritish69420 10d ago
At least he has your support and isnt alone. Being alone with this, is one of the hardest things i faced with growing up
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u/No-Refuse-8138 11d ago
I don’t know how much it helps but I can tell you you’re not alone in this feeling. Just with the knowledge of how this conditions manifests with never knowing what’s going to happen - I relate so much to feeling like I’m on borrowed time and I’m always appalled when I remind myself most people on earth don’t live like this. I even keep going to therapists and they’re literally just like “I don’t understand why you approach life the way you do, so it’s hard to give you advice”. Sometimes I feel like I’m a different creature amongst regular people. It helps I guess to think “well everyone has their ‘something’” but for us with Marfans it feels like we have a lot of somethings at random moments and that’s just built into who we are.
BUT - it does help for me to see posts made by other people with Marfans and seeing all the different kind of experiences and careers and families they have. That we’re not totally limited and that while yes we do need to take our health very seriously, sometimes something we want may not be in our life cause we just haven’t tried yet. Sometimes we’ll be held back by our condition, but a lot of times we won’t. The only other Marfan I’ve personally known, I met when she was going to medical school in a third world country with 2 kids she birthed on her own post-heart surgery (I was too young then to ask which one, I knew much less back then). Those are all things that I’d be scared to do as my adult self now because of Marfans, but I have to remind myself I’ve seen that all happen before!
Anyways, I also think there’s more people that might get it than we tell ourselves, even if only a few people more. I found out recently one of my coworkers has EDS and while yes definitely not fun for them to go through, it made me feel a little comforted to know a random person in my life has similar experiences even if a bit different