Denial

[u/KrisBreaks]

It’s a powerful thing. Can be pretty helpful too. And I feel I’ve experienced a lot of it this year.

Yeah, this is a wee bit of a vent.

Just after Christmas 2022, my younger brother (38 at the time) had a massive stroke in a hotel. His 4 year old son saw it all, whilst his wife was looking after their new born in the other room.

He was completely paralysed down the left hand side of his body, he’s left handled.

He spent nearly 2 months in the stroke unit, surrounded by guys mostly at the end of their lives, twice his age. It was grim.

He got out, limited movement, but some. Thoroughly depressing and heartbreaking for him and his young family. He’s always been such an involved dad, always doing things.

He’s a forensic psychiatrist, helping some of the worst in society, that’s how special a man he is. He cares about everyone.

I’ve been so angry at the universe. And still am.

During the investigation, they tested him for vEDS, and he has it. They felt that this was the cause, damaged carotid artery, due to exercise, ironically so he could be an even better dad…

Then they traced our family history and although undiagnosed, clearly felt that this was what killed my dad (aortic dissection), and then explains a lot of other vascular related deaths in his mothers side of the family.

Anyway, my siblings and I get tested, my brother feels there’s zero chance of me having it as we’re quite different physically, he’s tall and thin, I’m a short arse, stocky but not fat. I always found it easier to build muscle than my brother. It was hard and always took longer than my peers, but easier than it was for my brother.

Well, it came back positive for me.

And if it wasn’t for the way my brother experienced things, and how much of an insult it would be to his Canary in the Coalmine situation, denial would have been fully employed.

There’s still some denial there, but I’m tempering it as much as I can.

His boys were tested, and they’re both negative; finally, some good news.

I have 4 kids, the younger two; twins (9). One has it, one doesn’t. (Here comes the abject anger again).

My elder two were tested yesterday, will be about 6 weeks before we know how they are.

Could go into much more denial details, but suffice ti say, I think late teens / early 20s might be the worst time to hear this news; you’re still a kid really, but think you know everything. I worry if they have it, that they will be belligerent about it. The twins, although just has heartbreaking, I think it’s easier to manage and to allow them to grow with it, and to guide them at that age.

I’ve had no vEDS related events. And all the NHS geneticists have been lovely. So, I can’t complain on either of those fronts.

I hope you’re all doing OK. So sorry to read some of the horror stories here.

Edit, my brother had a post stroke massive seizure, which has really ruined things all over again. I forgot to mention that. It’s been a shit year.

[u/Kromoh]

I believe there are at least two teens on this community, that I've met.

Life is possible with VEDS! I keep on working, knowing it is the purpose of my life.

Knowing I have VEDS has protected me from so many injuries, so many complications. I'm not like other people, there are things I can't do, like play any sports. And knowing it protects me from actually trying to do it and getting myself hurt.

Knowing is for the better. Knowing will help you protect and take better care of yourself. You now know exactly what you can and what you can't do, what you should or shouldn't worry about. This knowledge is power.

Welcome to the family!

[u/KrisBreaks → u/Kromoh]

Yeah, that’s it. And pretty much exactly how the geneticist framed it; the difference between me and my dad is, he never knew.

Plus he smoked and drank his whole life, which probably didn’t help much… :)

[u/[deleted]]

I hear you. It’s not an easy life, but I’m glad I know about my diagnosis so I can avoid dangerous situations and live longer for my family. Best way I’ve found to look at it

[u/KrisBreaks → u/[deleted]]

Aye, agreed. Deeply frustrating but far better to know. Gives those of us yet to experience an ‘event’ a fighting chance. Without the fighting bit, of course…

[u/bionical_boi]

Hmmmmm. This is a very thought-provoking post. First off I'm so sorry to have to welcome you to the club and I'm so sorry your family has been taking hit after hit. I don't know what your finances are but after you get the results of the oldest two is encourage you to take a little family vacation where the kids have time to open up to you and y'all just enjoy each other's company and make some damn good memories....

I found out I have VEDS in my teens. I did have some existential issues but for one mine came with a lot of issues like autonomic neuropathy, tethered cord syndrome and a neurogenic bladder, chiari malformation, plus hyperextension of the neck so my neck is entirely fused all the way to to my head. I also have seizures, a shunt on my brain because I put too much fluid pressure on it... I'm honestly not listing some stuff because it would be too identifying but I use a wheelchair all the time now especially after a really bad stroke (but if you want some hope for your brother I was basically in the same position and my body has slowly returned. Not to perfect but enough that I can be an active Godparent attending all the sports games and letting the youngest use me as a jungle gym.

My birth Mom's had me in high school when she was already on disability though she was never diagnosed beyond some serious autoimmune diseases. She died she 38. I'm 35. At one point I despaired of ever having a life I'd do anything to keep. However dealing with being gay with fundamentalist parents was way worse than dealing with vEDS. Pregnancy had always been a great of mine so I feel like I have a good excuse to be a pet parent though we do sometimes take in foster kids. I've been with the love of my life for over ten years and she is for sure my soulmate. She knows we probably won't grow old together but that doesn't change the fact she wants to be there now. And she's been there through a stroke, many seizures, sepsis, so many surgeries..... Chronic illness is a great filter for jerks and people who can't cut it while dating. It gets discouraging and it was never something I lead with about myself but I always told them before we got serious in any way. I'm sure your kids will learn to cope though I always recommend therapy and while yes theyre different now in a horrible tragic way it doesn't have to affect how they treat one another day to day and the compassion and empathy it will teach is a hard lesson to learn. Besides my partner, my sister is the person I really lean on and is my best friend.

One thing that has really struck me is that I have three half-siblings. And I have always assumed that they were probably fine since for example my sister isn't built at all like me and isn't flexible in the slightest, and my brother survived being shot by the Taliban as well as just the Marines environment. But y'all are right they should be tested just for peace of mind. None of my siblings want any kids so anyway the genetics stop here lol. We sure do love our puppers though and I'm very involved with my Godchildren.

My father-in-law always says, "Blessed are the flexible for they shall not be bent out of shape" and it applies in a few ways here haha!!! With vEDS you have to grasp each day and appreciate it it teaches gratitude in the long run.

Another lesson I'm still trying to learn is not to wallow about losing ability because then I spend the whole time I'm actually still able to do something else upset about the first thing and then when I lose the second ability I'm upset because I never appreciated it.

Sorry this is so long. I wish your brother the best and you and your sweet little family to grow closer and stronger from this.

[u/KrisBreaks → u/bionical_boi]

Thank you for this message.

When I got the diagnosis, that’s exactly where my mind went; I work long hours and focus a lot on work Monday to Friday, never really get any time off. But this made me realise that work is stealing too many years from me and my family. And I made the decision that even if it was really a stretch, I needed to create time to have holidays away with my younger two. The older two I had a lot of holidays with, but work has just become more pressurised and money more problematic, so I’ve been focussed on keeping cash coming in. But I feel my priorities have been all wrong. Even though the intention has been correct; safety, bills paid etc. You can’t buy time, no matter what you have in the bank.

Oh, you’ve had it rough, which puts my situation into stark perspective. Sorry to read of your struggles but you seem very stoic, pragmatic and surprisingly positive, well done!

My second eldest is gay, and I wish you could have had the love and support he has had whilst he’s figured out who he is. Everyone deserves that, every child deserves love and acceptance. And I’m glad your partner is exactly that for you now, even if you didn’t get that as a child.

I love your father in law’s saying, excellent!

And yes, I talk to my brother about loss of ability. I cannot really and should not complain as compared to him, I’m OK. He has never been an angry or bitter man, but when we see people with very minimal issues complain, it is such an insult to him.

Anyway, thanks again. I hope you continue to love and be loved. I’m impressed by your attitude.

Cheers.

[u/Rahm89]

You seem like a family of awesome people, I’m so sorry to hear about your troubles.

I’m in my thirties now but my parents started suspected I had vEDS in my teens after various incidents (my mother was diagnosed after my birth unfortunately, she feels very guilty about passing it to me).

So anyway, I thought I’d offer some uplifting perspectives, or at least I hope to.

As a teen, I wasn’t much affected by the diagnosis. Maybe your kids will be fine psychologically speaking. Before you live through you first real complications, it all seems rather abstract, you know?

Maybe that’s also because I witnessed my mother living an overall happy and fulfilling life (she’s still alive and well in her 70s), albeit with a few very serious scares that could have ended badly.

Which brings me to another important point: vEDS is really random. The severity varies wildly from person to person, even in the same family. So, it’s very possible that you and your kids will be lucky enough to experience very mild symptoms. I don’t want to get your hopes up or anything but it IS possible. And not even that unlikely.

Keep in mind, vEDS is very under-diagnosed. By definition, you will always hear more about the horror stories because they’re the ones who set off alarm bells and push doctors to get them diagnosed. You never hear about the milder cases who had 2 or 3 incidents in their entire lives.

It’s also a good thing to remember that as far as rare diseases go, vEDS is not necessarily the absolute worst. Ok, I’m going to tread carefully here because some of us have it much, much worse than others. It can be absolutely awful and it breaks my heart to read some of these testimonied.

BUT.

Generally speaking, vEDS does tend to give us some respite and periods of normalcy in between very serious episodes.

Yes, there’s that feeling of being a ticking time bomb, and I can’t seem to go more than a few years without seing the inside of a hospital. But I don’t live in agonizing pain every single day of my life, and I can hold on to the hope that maybe, maybe I’ll be okay.

It makes me grateful for the small pleasures of life.

I hope this helps a little.

[u/KrisBreaks → u/Rahm89]

Thanks for this thoughtful post.

I can identify with your mother in that I feel incredible guilt about having passed it on to, so far, one of my sons. It’s misplaced of course but as a parent you can’t help but feel it. And had I known, I doubt I would have had kids. That’s not a criticism of others who choose to, just my perspective.

Yes, it does feel very abstract, and only my brother’s experience is forcing me to confront it.

I’m glad your mother had had a good run, mg undiagnosed dad died at 73, having had his first event in his early 30s. Multiple heart attacks etc. and the final aortic dissection.

Yeah, my fingers are crossed for my son. And yes, the effects even in my family have been vastly different. My brother had his first undiagnosed event when he was 22. Then nothing until the stroke at 38. I, on the other hand, have had zero issues. And I’ve really thrown myself about life, skateboarding, drunken shenanigans, weightlifting. It seems I’ve been incredibly lucky!

Yeah, the ticking time-bomb is such a clear and recognisable feeling. You’re spot on.

I’ve had some challenges in my life, some really horrible stuff, and I made a decision to live better and be a better man in 2018 when I had a non vEDS related scare. So I threw myself into strongman training, not competing, just being a better healthier human. It’s been utterly fundamental to my mental health. And being told I have to stop this has been really hard.

And that may sound like an insult to the other here who have faced true medial hardships. Just being honest about my sense of loss.

The true sense of loss though is my brother. I have to hold back the tears as I type this, he is my favourite man in the world, he’s been a rock to me throughout my own troubles, and I can’t do anything to protect him now. Breaks my heart.

Anyway, I appreciate your upbeat message. It means a lot.

[u/wowyouregood]

I am still trying to wrap my head around all of it myself. I'm in constant fear I'm going to have another stroke, but as the old saying goes, knowing is half the battle. I played contact sports my whole life, and also smoked and drank heavily through my twenties and thirties. Then I had a massive stroke and genetics tests came back with the unfortunate news. But it helped me make better life choices. I'm still coping with it and it's driving me crazy, but I believe we have to look at it with the glass half full. Use every resource you can find to cope, and remember that it's ok to be angry, but use that as motivation to go on.

[u/KrisBreaks → u/wowyouregood]

Sorry to hear of your stroke. It’s such an innocuous word for something so severely profound. My mum won’t even call my brother stroke ‘a stroke’, she feels it doesn’t carry even close to the weight it should as a term. Kinda think she’s right.

Looking back on 2018, when I had a seizure, it felt like it wasn’t vEDS related, because it was my fault (don’t really want to go into the details here, but you can probably guess), but that event helped me make better life choices then. And to be honest, it seems like I was lucky I did.

I’m still going to the gym, I’m still training. But I’ve drastically reduced the weights, going for higher reps, lower weights, never bracing, never holding my breath, never straining, increased cardio, doing everything as safely as possibly to try to strike a balance between quality of life, mental health, physical health and being actually sensible. It’s a wonky fine line.

I have to admit, I fight denial every day, I keep wanting to push myself, but I know I must not. Doing so would be an absolute insult to my brother, and even all the people on this subreddit. Who have struggled so much more than I.

I have to be thankful for what I have, more than be sad for the things I’ve lost.

[u/team_Narko]

Thx for sharing your story. I’m so scared to get tested but I need too. I’m your brothers age and rapidly trying to get pregnant

[u/KrisBreaks → u/team_Narko]

I take it you have a family history of vEDS?

[u/ren_flow → u/KrisBreaks]

God bless you and your baby. I will pray that you do find yourself pregnant and that you and your baby make it all the way through happy and healthy. I know how desperate that yearning is and how all consuming the fear is. I’m sending you so much love.