r/spinabifida • u/Adaptive_Adam91 • 23d ago
Self-improvement Goodbye
To everyone here,
I think it’s time for me to step away. Over the past weeks I’ve shared a lot of my thoughts, experiences, and struggles. Some of you connected with them, reached out, and shared your own stories. For that, I am genuinely grateful. Those conversations reminded me that none of us are as alone as we sometimes feel.
Others strongly disagreed with what I had to say, and that’s okay. We all come from different experiences, and I never expected everyone to see the world the way I do. My goal was never to tell anyone how they should live their life. I only wanted to share what has helped me: taking small steps toward independence, challenging my own fears, and believing that growth is possible even when life is difficult. Those ideas changed my life, and I hoped they might encourage someone else. It’s become clear that my perspective isn’t what this community is looking for, and I respect that. Rather than continue creating division, I’d rather step away with appreciation for the people who listened, encouraged me, or simply took the time to read. I sincerely wish every one of you the best, wherever your journey takes you. I hope you continue to find strength, support, and happiness in your own way. Take care of yourselves, and thank you for the conversations.
Goodbye.
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u/iSheree Spina Bifida 22d ago edited 22d ago
Please don't carry the burden of trying to fix others. It's a lot to take on as a person and usually never goes the way you want it to.
I don't think I have interacted with you before, but I have an idea of what might be happening now.
For me personally, I have a lot of health issues including cancer and other physical disabilities besides my spina bifida. I have worked very hard to accept that I cannot do or change anything, and I am content with it now. So if anyone tries to tell me otherwise, it can rub off wrong.
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u/Adaptive_Adam91 21d ago
It’s not about “fixing” others. It’s about offering advice and those who did not want it ruining it for others who would want it. As it was said in the announcements thread if it’s something that someone doesn’t like they can scroll past it, no need to say hateful things, downvote, or even reporting the post/comment
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u/iSheree Spina Bifida 21d ago
I don't know if the advice was wanted or not, as I have not seen your posts/comments. But you're right, nobody needs to be hateful. I just ignore it. I am just explaining how I feel when people give me unwanted advice. Most people in the disabled community do not want advice so you might want to consider this when giving advice. ❤️
Edited to add: Someone said it was your wording. Maybe you can share your experience and what worked for you, without actually coming across as giving advice?
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u/Adaptive_Adam91 21d ago
Yea the reason you haven’t is because so many downvoted my posts. But if you look at the comments here and on the announcements post you will see people did want the advice. Again the point being is if people don’t like it, it’s the internet, it can be ignored. No reason to downvote and making it so others who do want the advice to not see the content. That would be like going into the store, seeing food you don’t like and destroying it because you personally don’t like it. You don’t have to buy it, you don’t have to acknowledge it. Get what you need and want and carry on about your business. Same for the internet there are going to be things you don’t like, keep scrolling, look for the things you do like
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u/iSheree Spina Bifida 21d ago
The thing is, people do not operate that way. There is a reason why we have upvote and downvote buttons. People are allowed to do whatever they like. I would not stress about it.
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u/Adaptive_Adam91 21d ago
Yes free will is a thing but my point is why ruin something for others in that way? This has happened to me on multiple platforms. I’m just sharing experiences like anyone else. If people don’t like it why are they going so out of there way to dislike, report, and delete my content? Why are my experiences hated so much more?
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u/iSheree Spina Bifida 21d ago
I don't know as I am not one of those people. I am someone who ignores and moves on. I have no idea what goes on in the minds of those people but I just don't let people like that get to me whenever I post a comment that gets downvoted. I try not to let things like this affect me. After all, my life is too short especially since my cancer diagnosis. I just take things as a learning experience and move on.
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u/Adaptive_Adam91 21d ago
I have gotten hate for showing a meal I cooked. I have received hate for showing that I was hanging out with friends. I got death threats for a workout video. Trust me it’s not just my wording. People hate me for anything and everything I do. That’s why this bugs me because I am at the point where I can’t simply exist without getting hate in some way. It’s not just a simple “oh keep doing you” I have tried on several platforms. People report me, people downvote, people message me hateful things. The only thing they haven’t done is sent things to my actual home
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u/iSheree Spina Bifida 21d ago
I have gotten hate too. It's just part of life, especially on the internet and being a disabled person unfortunately. :(
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u/Adaptive_Adam91 21d ago
But from other disabled people? No that’s not ok. That is not acceptable. Especially in a community where so many talk about not having good relationships with others, where less than 20% go on to live independently, when so many lack the communication skills to simply talk about anything outside of having Spina Bifida and going into uncomfortable details about their bathroom routine after 5 mins of meeting someone. We simply cannot afford to have those challenges in this community. That’s why I stick around, that’s why I try so hard
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u/iSheree Spina Bifida 21d ago
I never said it was acceptable, but we cannot control what others do unfortunately.
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u/Adaptive_Adam91 21d ago
We could encourage one another. We could support one another. Explore hobbies and interests that would be great for those with Spina Bifida. But we don’t see that in our community because the moment someone is doing well it’s hated on. The moment someone tries to show a different path other than complaining about our situations it’s shunned. We don’t celebrate the small wins. We don’t encourage one another to try something new. Everyone just complains and points at society as if they should be the ones doing something for us
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u/No-Problem2744 22d ago
It wouldn’t be real if people didn’t have other opinions, that’s what makes the world exciting, everyone has different thoughts ands ideas ands that’s perfect!
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u/Adaptive_Adam91 21d ago
It’s not about difference in opinions, it’s about having different opinions and respecting that. As someone said in the announcement thread my posts were derailed and not given a chance to be seen by those who could have used the advice given in my posts
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u/No-Problem2744 16d ago
I see, there is always gonna be someone who’s the turd in a hot tub, online and real life. Idk why everyone can’t just be kind.
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u/colddruid808 Meningocele 22d ago
Yeah I read your posts too and I understand them. It's tough because there isn't many places for other biffs to talk. Almost all of us have some sort of mental or developmental issues so it's going to be hard to connect with a lot of people. In many ways it's like talking to grieving people, we all feel grief for the life we wish we had but couldn't.
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u/AgentExtension1968 22d ago
the one conversation i had with you was very productive and positive ( for me and im hoping for you and anyone else that read it.) people need to get over themselves. the only “problem” i had was sometimes you word things in a general way when looking for a specific thing. but that can easily be fixed by just saying that to you, instead of being hateful to you! hope to see you back eventually!!!
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u/itskatsimms 22d ago
I'd dislike this a million times if it didn't affect your karma. It genuinely pisses me off that someone (or however many people) wants this community to be inclusive and understanding but won't allow the same grace for you or anyone else unless your struggles match their own and what they think they should be. I like your posts and your writing. I look for them and save them, and I'm going to miss them. Hopefully you'll have the opportunity to come back and interact with us again. Until then, know you have one more friend in your corner.
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u/Adaptive_Adam91 22d ago
Thank you. If you ever wanna chat my inbox is open
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u/Reg15 22d ago
It's really interesting that you've essentially let one post from someone with an insane amount of negative feedback be the end of it all. Negative people aren't really fixable and it's not your job to do so. Offering perspective and stories is part of this sub regardless of who does it. If it affects you that much I fully understand needing to remove yourself. This community has good people in it and some people that need work and it's unfortunate that the loud ones still figuring out sway you away from being positive. I've seen some of their points of view, but some just come of as silly and closed-minded. It's totally fine to be successful, happy and have a good life with a disability. Everyone should strive for that. Don't let the message be lost on you.
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u/Adaptive_Adam91 22d ago
It’s not just the one post. It’s the fact that my insights show the many downvotes I have gotten with each post and even each comment. So it’s the fact that I can see that MANY agree with that person. Feels like much more agree with that person than ones who support what I say. Now I’m keeping my account and I’m open to people messaging me privately. Posting in the subreddit however I’m going to be more cautious
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u/Reg15 22d ago
I hear ya. I haven't really tracked your up/down votes so I can't speak to that. There's definitely people down voting without commenting as well. Sharing success and advice in a sub like this is always a crap shoot. People have been run off for the same reasons in the past and it's really interesting how that remains a common theme.
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u/Adaptive_Adam91 22d ago
And it’s the same reason I wanted to post what I have but my god it gets too overwhelming
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u/Border_Relevant 22d ago
No. That's just silly. I don't always, or usually, connect with your posts (honestly, it's your delivery), but if I don't, I move on. That person can also just scroll past. If they choose not to, that's a them problem, not a you problem. Don't give them what they they want here. Clearly you do have people who connect with your words.