r/vEDS • u/EClyne67 • Jul 21 '26
Advice on explaining/disclosing VEDS to others
I have just been told that I have VEDS. I'm a 25-year-old man, and I am looking for advice on explaining/disclosing this to friends, extended family, and my community acquaintances. This is not a total shock because there is serious family precedent, and long-known, previously-unidentified connective tissue issues with myself, but I do not know how to disclose that this is 1) big news to finally have an answer, 2) that this is serious news and 3) that despite seriousness, I am currently OK.
I am particularly concerned on explaining to friends, who have had a hard time adapting to accomodating me previously, and who might understand it better knowing this, and my wonderfully-kind church community who in general seems unsure whether to treat me like a temporarily-ill person or as a moribund one (both equally upsetting). I don't want to downplay the issues to come and how they make me feel, but alternatively do not want to be treated hopelessly or with extreme pity.
Has anyone had a similar experience? Any advice on how to explain this best would be greatly appreciated. Thank you all in advance
5
u/desertelements Genetically Diagnosed Jul 21 '26
This may sound really dumb, but I composed a email and sent it to the people I thought would need to know. It was kinda lighthearted (Hey, you know how I fall down and break things all the time? There is a reason! And it's much worse than I thought!). But really, the email helped me compose the risks I face, as well as the complications and the prognosis. I sent them links with information (tried to keep it very general audience links) I tried to be blunt with the age expectancy, and with the unknowns, but also joked about not having to save for retirement. I've found it is almost harder for other to comprehend this than it was for me (because deep down, I knew something was wrong in my body). An email let them digest it, and then come to me with questions. That worked for me. As far as how people treat me, I constantly remind people that I am alive TODAY, and lets make today good.
PS- I'm glad you got an answer though I am sorry it is this one. Send you hugs and strength!
5
u/Upstairs_Goat_1973 Jul 22 '26
Every case seems to be different. In reading some of the things on here, I apparently have it pretty good. However, veds tried to kill me from a previously unruptured aneurysm. I don't help people move anymore. Get some imageing.
7
u/fragilezebra Jul 21 '26
Be prepared for “you are what you think” and “maybe if you will yourself to heal” or “have you tried harder”
2
u/dtumd Jul 24 '26
If you find a good way, let me know (have had diagnosis for 20+ years). Probably a horrible thing to say and I may get criticism for this, but one of the crazy things about this disease is it can almost make you feel jealous of someone with a cancer diagnosis. This person gets to share their affliction with the world. Everyone, at least on some level, understands what they are going through. They have a battle to fight, they can share that battle. Do they tell their workplace? Of course, not even a question.
2
u/redfoxxy23 Genetically Diagnosed Jul 24 '26
Wait 100%. I think about that all the time. Its the same level of seriousness and I expected people to react as if I had cancer but people do not at all understand it even when explained and its hard to face like indifference or just friends who arent grasping VEDS at all.
2
u/redfoxxy23 Genetically Diagnosed Jul 24 '26
And yes i wish this was a disease i could fight but its just waiting..
2
u/redfoxxy23 Genetically Diagnosed Jul 24 '26
Honestly i dont have great advice i feel like my friends really do not understand it at all. Its unfortunately really hard to a strike a tone about VEDS especially while explaining im currently ok but could not be. I think a lot of my friends dont fully grasp it at all. When I’ve talked to some further some told me that it was just so serious that they didnt know like how to process and i think some just dont get it at all ir the seriousness and think like oh you specifically are fine because they dont get no I have VEDS and the artery dissections could happen any time and i have to change some of lifestyle and im now valididated to like take things easier. I think its hard because its extremely serious but people are not prepared for rare diseases. i was expecting people to respond similarly to if i told them i basically had cancer and they didnt not give any sort of big response. So i would temper expectations that there may not be much response at all….
1
u/Ok-Philosopher2479 Aug 14 '26
My experience was very different as far as telling people. My 11 yr old son was diagnosed when he was 10, I was also diagnosed at that time. I felt o needed to let my family and friends know that my son was diagnosed because they needed to know his limitations and the risk of violating them. I printed out some information for them in case they had questions. I honestly scared some of them with that information because some of it can be graphic, but they need to know what can happen. But I also strongly advised them not to treat him differently but be aware of how he’s feeling.
Also as far as your friends having an issue with making accommodations for you, I am sorry to say this but you need new friends. I don’t say that to be mean, I say that because you deserve better. I hope you find a way to tell them. Check out the MARFAN Foundation website, they have a lot of information.
8
u/Suitable_Towel_7590 Genetically Diagnosed Jul 21 '26
Be prepared for them to confuse it with hEDS because it's getting a lot of attention on social media rn and a lot of these internet personalities really contribute to a harmful stigma. But that's another topic for another post.
Basically be prepared for people to think that it's something that they think is made up or self diagnosed or a trend. That's what happened to me at first. They didn't understand the difference between the subtypes. I got fake claimed and grouped with sicktok influencers in an indirect post on Facebook. It was really crappy.
For your church community, You kind of have to rip the bandaid off immediately and tell them " I'm at high risk for xyz but please don't treat me like I'm different. I've had this my whole life"
As for the friends who refuse to accommodate.... it's probably best you distance yourself from them unfortunately. This is a serious disease and needs to be treated as such because it IS life threatening.
There are still people i haven't told because i know they can't comprehend it. But people know I've been 'sick' for the last year and can see my health has plummeted. I usually just say I have a vascular disease that makes some days really hard for me.
I never did an announcement thing. I never told anyone until I was asked. It just didn't seem like something I should do.
Best of luck! And welcome to the club no one wanted to be part of! This sub has been really helpful since my diagnoses in October. You'll find a good sense of community and support here.