r/spinabifida

i'm a 35-year-old woman about to turn 36 on friday. i have struggled socially for a loooooong time; i've gone through several periods in my life where i thought i had found "my people", but nowadays i kind of feel like i'm still searching. a lot of the friendships i have had in the past were marked by a feeling that i was closer with people than i actually was, which took a lot of maturing for me to notice/name. i have had periods where i had a lot of friends, but a lack of closeness in those friendships because i struggled with the give and take and, again, had a hard time gauging closeness. i had a best friend for over twenty years, but i ended things a couple of years ago (long story, neither of us was great to each other). now i struggle to feel close to people at all because of all these factors. i spend the vast majority of my free time alone, which does not help.

like i said in the beginning, my 36th birthday is this friday. i have been wracking my brain as to who i want to spend it with. i do still have a number of friends, but i'm pretty distant from most of them and a lot of them don't know each other. i have a young assistant who helps me with errands and certain executive function-y things that i struggle to stay on top of. i decided to invite her to dinner for my birthday. we are close and i know we will have a great time, but i'm feeling so much shame that i'm spending my birthday with someone i'm basically paying to be my friend because my other relationships are so all over the place. not necessarily seeking advice, just feeling bummed and looking for support. i know some of y'all will get it.

Here is something I wrote summarizing my experience growing up with Spina Bifida. I see parents in here asking questions all the time and maybe this will sort of give you a new perspective

“What’s Wrong With You?”

They asked it
before I even knew
what the question meant.
“What’s wrong with him?”
Spoken softly beside grocery carts,
doctor’s offices,
school hallways—
as if I couldn’t hear it
just because I was small.
And my parents stood between me and that question
like a shield, saying:
“Nothing.
He’s like any other kid.”

And I was.

I laughed too loud.
Got dirt on my shoes at recess.
Struggled through homework.
Wanted friends.
Wanted to belong.
But children notice difference
the way sharks smell blood in water.
So eventually
the question reached me directly.
“What’s wrong with you?”
And the cruelest part was
I never had an answer.
Because I wasn’t crying.
Wasn’t fighting.
Wasn’t broken on the classroom floor.
I was just existing
in a body people needed explained.

Then came anger.
Teenage anger.
The kind born from chaos at home,
from feeling stuck while everyone else moved forward.
The kind that grows in silence
when your life keeps getting decided for you.
Held back.
Redirected.
Managed.
And for the first time in my life,
something actually was wrong.
But nobody asked then.
Not really.
Not when I was drowning in directionless noise.
Not when rage became easier than grief.
Not when I needed someone to look past the disability
and ask about the human being carrying it.
Funny how that works.
People questioned my existence
before they questioned my pain.

Then adulthood arrived
and I tried to heal.
Exercise.
Poetry.
Art.
Anything to keep my mind from becoming
a locked room with no windows.
And somehow
“What’s wrong with you?”
came back again.
As if healing looked suspicious.
As if trying to become whole
was offensive to people
who preferred me easier to define.
And now?
Now I have stability.
A career I care about.
People who love me.
A life I fought hard to build.
And still that phrase echoes
like a smoke alarm with dying batteries.
“What’s wrong with you?”
Sometimes from strangers.
Sometimes from people close to me.
Sometimes from my own reflection.
After a while
the question stops sounding like curiosity.
It starts sounding like accusation.
Like existing differently
must mean existing incorrectly.

And maybe that’s the real wound.
Not the disability.
Not the anger.
Not the years spent feeling behind.
Just the exhausting feeling
of constantly being treated
like your humanity came with an asterisk.
But I think I’m finally learning something.
Maybe the question was never mine to carry.
Maybe all these years
people looked at anything unfamiliar,
anything resilient,
anything they couldn’t immediately categorize
and called it “wrong.”
Not because it was broken.
But because they didn’t understand it.

Anyone else tired of Dr's offices and medical suppliers? I hate that I have to keep contacting a Dr's office when my script for catheters I've used for my entire 29 years of life " expires" prescriptions for stuff I need to not die, should not expire. And im in a weird transition period where I'm too old to go to the pediatric spinabifida clinic anymore, and I recently finally moved out of my mother's house last year, and have not found a new primary care doctor. How are people supposed to manage prescriptions for stuff they need to not die, when we've just been left to the wind, with doctors that know nothing about our condition or won't take new patients?

- sorry, rant over

Hi

New to Reddit.

Recently, baby was born with spina bifida myelomeningocele. We are scared and uncertain of what next, how to manage day to day and prepare ourselves mentally and emotionally.

Looking for any general advice and anything you wish you had known, known to ask.

Any advice at all.

Thank you and sending love and prayers to everyone here.

i cant believe im posting this on the internet but i need to know if im the only one

backstory: i have MM and have cathed every 3 hours ( while awake) for my whole life and had a mitrofanoff from age 5 -11.

basically at 11yrs my mitrofanoff got a kink in it so my urodynamics lady put a foley in it to try and open it back up. (unrelated to the question but horrible timing) my mother was by my head and playing with my hair or whatever and saw MY SHUNT. hours later after being in the ER my mom was like “ you gotta go cath” so i tried and nothing came out.

i take my pants off and THE OTHER END OF THE FOLEY( the side with the balloon on it) WAS STICKING OUTSIDE OF MY URETHRA.

most embarrassing thing i at 11 years old have ever experienced

i just wanna know if this has ever happened to anyone because at the hospital i go to at the time this had happened IT WAS UNHEARD OF which definitely added to the embarrassment

Hi everyone — after and interesting interaction on a beach - I realized how drastically different my feet were than others. I’ve been wondering how common certain foot differences/issues are with spina bifida and wanted to hear other people’s experiences.

For me, I have curled toes that don’t really move much, limited sensation in parts of my feet, and feet that are kind of small length-wise but very wide in the toe box area. Also SUPER high arches. Finding comfortable shoes has honestly been a nightmare sometimes.

I’m curious:
Does anyone else have curled or stiff toes?
Do you have reduced sensation or numb spots?
Are your feet shaped differently (wide toe box, high arches, flat feet, etc.)?
Where do you actually find shoes that work comfortably?

I feel like a lot of mainstream shoes are made for “average” feet and don’t account for things like toe positioning, width differences, high arches, and or sensory issues.

Would love to hear what has worked for other people — brands, styles, adaptive shoes, sizing tricks, anything really. Thanks!

im not sure if this is the right place to post this but im hoping that it is and that someone can help. Im a single mom of an amazing 9 year old girl who has Myelo (SB). My daughter is my world and my heart is so heavy and I’m so sad sometimes when I think about how lonely she is . She doesn’t have any real friends that talk to her and she is always on the outside looking in . I’ve tried for several years to make plans with other girls in her class and in the beginning they were all about play dates etc with my daughter . She struggles with social stuff and I’m assuming it has to do with her having hydrocephalus . She isn’t able to really hold any real convos with other kids and she pretty much does the whole “cocktail party talk “ only . its hard to explain so I hope someone on here knows what cocktail party talk means lol . Also with her afo’s , balance and mobility challenges she’s been bullied a lot . She’s been ridiculed , ignored a lot when trying to talk to other classmates , and even physically assaulted (a boy shoved her down when they were playing outside at recess-this boy also calls her weak, tells her nobody likes her and that she doesn’t matter ).

I have had her involved in things outside of school but she still never is able to click with other kids tried everything and I’ve searched online for years to find ways for her to meet other kids that have spina Bifida and other disabilities and it really hasn’t helped either . Also any special needs groups near us don’t have any kids that have physical disabilities and I really think that if she made a friend that she could relate to it would help her so much . now that she’s older she’s starting to tell me how she isnt a normal kid and that she isn’t smart and that she can’t do anything that all other kids can do . Shes so lonely and im her only playmate which of course I don’t mind being but she NEEDS a friend her own age etc.Also I don’t drive right now so i cant just hop in the car and travel out of my town and take her to any adaptive sport or special needs groups.Ifeel like im failing her. if anyone that reads this has any advice or ideas I would greatly appreciate it . Also if anyone has a child with Sb around my daughters age or evena little younger or older and if you are in Michigan please reach out to me .

Hi r/SpinaBifida — I’ve been spending some time in r/hydrocephalus and realized many people here may be dealing with both conditions, so I wanted to ask here as well.

For those of you (or your children) living with hydrocephalus alongside spina bifida:

1. Do you track shunt-related symptoms at all day to day? If yes, how? Paper notes, phone notes, memory, something else, or not at all?
2. What’s the hardest part about explaining possible shunt-related symptoms to non-specialists (GPs, school nurses, family members, teachers, etc.)?
3. If you’ve had neurosurgery / neuro follow-up appointments recently, did you bring written notes or mostly rely on memory?
4. Are there symptom patterns or day-to-day issues that people without lived experience usually completely overlook?

I’m asking because I’m building a patient support tool focused on symptom organization for hydrocephalus families, and I want to make sure I’m not missing context that matters specifically for people also living with spina bifida.

Completely honest answers are genuinely helpful — including “I don’t track anything and it works fine.”

Disclosure: I’m the developer behind ShuntCare, but this post is for research and feedback, not a sales pitch.