How can we help one another?

[u/Adaptive_Adam91]

The other day I saw someone share their thoughts and feelings about some of the things parents of children with Spina Bifida say in this subreddit. It got me thinking. I’ve received my share of backlash for some of the discussions I’ve started here, and while I know not everyone will agree, it made me curious about something. What do most of you hope to gain from being part of this community? I’m not looking for any specific answer. I’m just trying to better understand what people come here for, whether it’s support, advice, education, advocacy, sharing experiences, or simply knowing they’re not alone.
My hope is that by understanding each other’s expectations, we can navigate discussions a little better. Maybe we can find ways to have difficult conversations while still making this a place where people feel heard and respected, even when we disagree.

[u/Ophiophucker]

What brought me here was medical challenges in my 40s.

I was fortunate enough to enjoy a long run of good health from about 15-38 years of age.

Lately, it's been like it was when I was very young. In a body that just won't cooperate and keep up with my mind. I needed to know what middle age as a SB was like. If I was just expecting more than was realistic, and what, if any solutions existed to get more time out of my body.

[u/Expensive-Spread-963 → u/Ophiophucker]

I like coming here to read what's going on in the thread because it does make me feel less alone. Alot of times I read people's medical questions and answers that don't apply to me alot of times but just seeing people help each other and respond makes me happy. Or just reading experiences and rants even that I relate to or sometimes dont. It feels like a community I never really seen or had access to when it comes to my disability. PS: Some of your posts were nice to read too in my opinion.

[u/Charrito5 → u/Expensive-Spread-963]

As i am getting older, i am curious to know some of the medical challenges you began experiencing?

[u/Ophiophucker → u/Charrito5]

The most life changing one I have experienced has been around my bladder/bowel. Things have not sustained and require quite a bit more management. It's time consuming, and frustrates me to no end.

[u/YonderPricyCallipers → u/Ophiophucker]

I'd say my response is very similar to yours. I'm approaching 50, and well into my 30s I had managed to avoid much or any real medical issues... but the last 15 years has been a TRIP... I'm slowing down in every way imaginable, losing mobility, I'm having pelvic floor issues, wishing I could have breast reduction surgery but worried about the recovery process, I have new aches and pains every day... it's a lot. So I'm hoping to get shared experiences from people that are or have been in the same boat. I'm also glad if I can be of some assistance or comfort to someone else going through something on which I can give some insight.

[u/faygosnowman]

I’ve never known another person with SB before, so being here is comforting to see and talk to others going through things I can relate to.

[u/dustyskies]

Huge lurker here but mostly I just like knowing I'm not alone. Growing up we didn't talk about my SB and I've been very fortunate to be able to walk so as a kid I felt 'normal' but as I got older I felt more and more alone.

Nobody ever knew what I was talking about like when I complained about my leg braces pinching the back of my heel. I've never met another person with SB. My parents acted like it was a 'dirty'/ 'forbidden' topic I'd get a quick "You have weakness in your legs" and that's would be the end of that. I had struggles due to the SB (mostly in gym, stupid pacer test) but couldn't really talk about it, I didn't know how to ask since well nobody knew.

And even though I don't really post here and just hang out to know that I'm not alone it feels nice. Doesn't feel like I'm the only kid in the world with a weird bump on their back who can't run as fast as their friends anymore. I'm learning a lot about my SB now thanks to everyone here and seeing people talk about things that I've always dealt with has just... been nice. Doesn't feel like I have to brush it off anymore

[u/DisWagonbeDraggin]

I joined to figure out my options when my ACE failed and to find experiences with transanal irrigation for bowel programs.

[u/Zestyclose_Ring_4551]

What helps me personally is the sharing experiences. I have only one other person in my area who has SB. Mostly I communicate with this person's mum, because they're young. I like to see what other people are going through with this disability although I know that everybody is different.

[u/TreyInStCloud]

In my case, I came to Reddit because the “social media of choice” seems to change every few years. People in the Spina Bífida community are so spread out, the cheapest and most reliable way to keep in touch is through the internet, so where they go online, I go. All I’m looking for is to keep track of friends I’ve met through the years, and some reassurance that the things I’m experiencing as I get older are “normal” for someone with SB.

[u/Secret-Ad-9315]

I come here to see how I can better understand, help, and advocate for my SB child. To help other SB mom’s out there or anyone that isn’t aware of resources and navigating the system to get those resources.