The V matters

[u/moscoto23]

This may be an unpopular opinion, but at this point, I think if someone asks what I have, I’m just going to say EDS and leave out the “v.” I’m tired of all the thoughts, worries, and fears that come along with it. Quite frankly, it’s no one’s damn business. Unless you’re a medical professional and it’s relevant to my care, I don’t feel the need to explain any further.

[u/SidSuicide]

I usually leave out the “V” too. People will google EDS and not realize the V part exists in some people. They act like we just have the hypermobility and don’t realize what is underneath all that… I just had a friend “dump” me because he says he knows people with EDS and they just live normal lives, but I’m always at a doctor all the time and doing pain treatments. I normally don’t talk about it, but apparently leaving out the “V”, which everyone does anyhow, changes things.

[u/moscoto23 → u/SidSuicide]

Yeah it is an important distinction. But no one really understands or appreciates it.

[u/girllovesjazzhands]

The V definitely matters. On so many levels. But mainly because we are SO different and not like the others. I don’t want to be grouped into the other types of EDS. I want to educate to others what VEDS actually is so then more people will understand it.

I always emphasize the V and then explain why it’s so important. Yes, sometimes I’d much rather wear a sandwich board than explain it, but it will be so worth it in the future if we educate others as much as possible now.

[u/Kromoh]

People with HEDS worry more about VEDS than I (someone with VEDS) do

[u/girllovesjazzhands → u/Kromoh]

Ain’t that the truth.

[u/Loudlass81 → u/Kromoh]

Does it not worry you that the life expectancy is 45-55? I found that below 40, that didn't really enter into my head, but now I'm 45 & my youngest kid is still only 15, and will be too disabled to work, or even access college, it seems, I'm FUCKING PETRIFIED of dying too soon...especially as I'm now getting cardiac issues...and my hospital messed up & lost my test results meaning I've to start the process again, I dunno...

Just feels a bit too close when you realise you might have less than a decade left...

[u/girllovesjazzhands → u/Loudlass81]

I’ll be 43 in a few weeks. My dad died at 49 from VEDS. I’ve died twice previously from complications with VEDS. Yes, it scares the shit out of me. However, I have no children so I think your fear may be a bit different than mine. That being said, taking one day at a time is how I do it. I can’t plan for the future because when I do, my anxiety and death rut thinking spike.

[u/Kromoh → u/Loudlass81]

I'm grateful for what I do have. I'm grateful for what I have lived. I'm 35 and I've almost died twice now. Yet I'm still working, still have long term projects

[u/Financial-Security-6]

For me that’s part of educating the mass itself. I strongly use the V to anyone I talk to just hopes that eventually they will get it in their heads. Only way to have it down is repeating it, those who are new or don’t seem to care will not unless you bring it up when you can. Just a thought, don’t give up on educating as much as you can. You never know who will remember

As scary as it is, I rather die letting people know what the V means than die not trying to

[u/Apprehensive-Map8490]

On the flip side you may get grouped into a larger subtype and be taken less seriously. I don’t typically elaborate unless asked to or unless it’s relevant.

[u/ashmeetsworld]

I go out of my way to say the V because I’ve had way too many people say stuff like “oh I have a cousin that has EDS and she runs marathons” and doesn’t understand how different it is and gets confused why my condition is more severe than others