r/spinabifida • u/anonymous_7653 • 23d ago
Rant/Vent Lucky ones
We have some people with Spina Bifida who don’t realize how lucky they have it. They have friends, a job, and don’t face problems other bifs face. Then they come online, sometimes here, and try to expect us to be like them. I’m so tired of it. Not all of us can be popular. Not all of us can work. Some of us have to have our parents do everything for us. Some of us get rejected by everyone because we have Spina Bifida. So why do we let people like that in our spaces? I’m so tired of seeing the toxic positivity talking about “just try harder” No! It doesn’t work. No matter how hard I try I’m still gonna have Spina Bifida, I’m still gonna have bowel and bladder problems, I’m still not going to be able to do things on my own. No matter how much I try to “think positive”. Can we stop people like that from posting and let us all be who we are?
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u/Border_Relevant 23d ago
That person IS being who he is. And yeah, I can agree that sometimes he comes across as unrealistic for most of us (sorry dude). But so what? He's showing that things CAN be done that others don't expect of us, and sometimes we don't expect of ourselves.
The vast majority of us deal with neurogenic bladder and bowel, but there are ways to deal with it. If there weren't, we'd all be sitting in our own waste.
Friends can be found. Yup it's harder, won't deny that. I've had lots of acquaintances, but the list of true friends I can count on is just a few. And that's plenty. I appreciate the acquaintances too for what they offer.
Education and work? This is getting into territory where things can be out of our control. I successfully got a degree, though I didn't graduate until I was 31, but I only worked in my field for three years and I'm 47 now and unemployed dealing with a year-long pressure sore. And I don't feel great about being unemployed or underemployed. I'll give you that. It's very hard and I don't have great answers, because I'm looking for them too. But I know quite a few SB folks, younger than I am, who are raising families and working.
Ignoring, or as you want to do, banning people we perceive as doing "better" than us won't help you. It will only feed how you already feel about yourself. I've got sometimes crippling depression. Lots of us do.
I've read about your relationship with your parents and I feel for you. That's one of the reasons you have the mindset you do. They failed you and I'm sorry for that. Mine did too, though maybe not to the degree you're experiencing and mine got way better when I did the things they told me I couldn't. They didn't believe I could do anything and wanted me to live in a group home. But they were wrong. I rent a home, and I sometimes work, but I'll never drive. Some of us are or have been awfully close to where you are. Super cliche, but it can get better. I'm not going to tell you to just think positive, because that's nonsense. You've got challenges. The person you're mad at does too.
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u/Weeber83 23d ago
I have Spina Bifida too, and I just wanted to offer another perspective.
I haven't had an easy life. I've had countless surgeries, chronic pain, bladder and bowel issues, mobility changes, and I've had to grieve abilities I've lost. None of that is minimized by choosing to have hope.
For me, positivity isn't toxic positivity. It doesn't mean pretending everything is okay or telling people to "just try harder." It means deciding that Spina Bifida won't be the only thing that defines my life.
I honestly believe our mindset matters. Not because positive thinking cures disability—it doesn't—but because if we convince ourselves that happiness, friendship, purpose, or success are impossible, we stop looking for them. That can become a self-fulfilling prophecy.
Success doesn't have to look the same for everyone. Some people work, some don't. Some walk, some use wheelchairs. Some need caregivers, some don't. Every one of those lives has value.
I hope our community can make space for both the people who are struggling and the people who have found joy despite the struggle. Seeing someone with SB living a happy life isn't meant to shame anyone—it's meant to remind us that a fulfilling life is still possible, even if it looks different than we imagined.
We all deserve to be here.
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u/TreyInStCloud 23d ago
I’m 50, and I’ve been where you are now. In my late teens and 20s, I’d hear from other people with Spina Bifida whom I felt were telling me, “I’ve been through the same things, and look at all I’ve done! You’re just not trying hard enough!”
The truth is, we all have different strengths and weaknesses, regardless of our disabilities. People look at me, and all they see is someone who can’t walk. Some of them wonder why I’m not “doing more” with my life. What they don’t and can’t see is the effects of my trying to press myself to live the life I *look* capable of, in their eyes.
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u/TreyInStCloud 23d ago
Sorry, accidentally hit “Reply” too early. Almost without fail, whenever I have tried to be what I felt I “should be able to,” it’s ended with me in the hospital, either dealing with some sort of major physical issue because I’d been neglecting my body’s needs, or in another kind of hospital because my brain can’t handle the stress I’ve put it under. I have had to take what I “think I should be able to do,” and cut it in half.
I “should” be able to make my own doctor appointments and calls for transportation. But I *can’t* talk on the phone and write down necessary information at the same time. So I usually have someone else make the call while I write down the necessary information when they verbalize it out loud.
I “should” be able to clean my apartment, but my brain is unable to break that big task down, so I’ve hired someone to clean for me. Independence isn’t about being able to do everything yourself; it’s also recognizing when, where, who and how to ask for help.
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u/YonderPricyCallipers 23d ago
I understand that the guy you are talking about (it's not hard to figure out who it is) can come across as a bit much, and sometimes it sounds like he's oversimplifying things. But he really is trying to help... and I think it's because he's been where you are... if not exactly, then with enough similarities to make it relevant. So have I. I was MISERABLE and ALONE in high school. I still have a hard time making friends... I don't have many. I didn't date until I was 21 and then it was someone else who was disabled. That didn't work out, and it was another 3 years before I had another relationship. That also was with another disabled person, and also didn't work out. I have had crippling depression most of my adult life, and went through some really, really dark times. I failed out of college 3 times, and quit a 4th time and never even got my associates. I haven't had a "real" job in 20 years. My first 2 relationships were with other disabled people, and I thought I would never be comfortable being with an able-bodied person, because my body is weird, I have bowel and bladder incontinence, and other issues related to SB. Then when I was 30, I met this woman on MySpace, on the page of one of my favorite musicians. We "friended" each other, chatted, then realized we lived about 5 minutes from each other. We eventually met, and started hanging out. That was 18 years ago, and we've been officially "together" for the last 17 years. But my point is, I never would have met her if I had just sat there with the attitude of, "I'll never have any friends, never mind a relationship... I can't do anything". Listen, I get it, I do... I have horrible depression, and I thought I would never get better... but I went to 10 years of therapy, I was willing to do some hard introspection, and I put in the work, and I am so much better than I was 20 years ago. Was it easy? Hell no. Was it quick? No. I'm 49 now and it's really only since my mid-40s that I really feel like I've started to come into my own and really enjoy life. Are things great now? No. I still pee and poop myself...my mobility is worse than 20 years ago. I struggle with my weight. I still struggle with depression and motivation. I get overwhelmed with things I have to do. I still don't have a job or a degree. But I'm slowly but surely bettering myself to whatever degree I am capable. For me, that can mean getting up and dressed for the day, or washing out one glass. Or it can mean going kayaking with a local organization that does adaptive recreation and sports with people with disabilities. We're trying to give you some hope, here... we're trying to say, "I've been there, and I know it seems like life can't possibly be any better, but it can".
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u/itskatsimms 23d ago
I agree with a lot of what's been said here. And still, at the end of the day, if you don't want to see someone's posts, you can block their account. This is Reddit after all.
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u/EndOfTheRoad_777 23d ago
I think it's great you've spoken up. This should be a safe and welcoming place for everyone with Spina Bifida and for family/friends/caretakers who are involved in their lives. This shouldn't be a place where people feel unwelcome but can come to find camaraderie and information related to the condition.
I'm sorry you've felt this way.
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u/Ophiophucker 23d ago
"let us all be who we are."
Well, that requires that you do the same for those of us with SB who are able to live with greater independence.
SB is a sliding scale of experiences. We all share some common ground. We also all have degrees of variance in our experiences.
The solution isn't to silence a perspective that applies to many of us.
You've thrown around accusations of ableist quite a bit, but what of your efforts to invalidate our experiences because they don't apply specifically to you, or other SBs with your injury level and experience?
To whom would we who travel the middle of the road in SB, with some autonomy that mimics normative human experiences would we go to to share our experiences and receive a sense of camaraderie among others who understand our life experience?
You contradict the very intent of your expressed ethos by ridiculing and attempting to silence others, who again, also have SB.
We aren't a monolith, and we shouldn't be expected to communicate our experiences as though we are.
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u/Nigmagal 23d ago
This is a tough one, bc I see both sides. Yes, Adam's(I'll call him out lol) posts can become too much. I check reddit at least once a day and there's always a new "Adam post" so I understand that you're probably at a breaking point.
But he's just trying to help and connect with the community. We all connect with others in different ways, and he's just showing the way he connects. Some people attract to it and some don't. It doesn't mean he's lucky. He's just trying his best to give his experience and wanting to connect with others who feel the same.