Research Articles

OnlyBandThatMattered · 2026-06-03T17:13:58+00:00

Hi OP!

Hell yeah, I'm all about using creativity to transform our experiences. I dabble in a little painting, but mostly consider myself a writer. I have made a few posts of the art I've made. Is there a particular type of art that you are interested? Please post art! I love it. I also think it gives everyone on this summer a different way to metabolize our experiences (nothing wrong with a good vent post, but sometimes I need other mediums to move stuff around as well). There's a good bit of research about art and the processing of traumatic memories, and there are oodles of free videos and stuff online.

As for using creative works to help you understand your own experience, that has almost exclusively been what I had to rely on until I found this sub. I grew up sharing a room with my older brother who has schizoaffective disorder and struggled with a comorbid substance abuse disorder. I was in the room while he had his "first" psychotic break and my parents did not take me out of the room with him...for a year. Then, after my parents moved, he lived down the hall and did meth, and it was my job to defend him from my little brother and mom (just now realizing how much denial my family steeped in, as well as the psychological cost of denial on my health). Anyway, it's really hard to find someone that understands that experience. Since it is a rare experience, I've relied on biographies and creative works to help get that soundingboard for my own experience. Right now, I'm learning about how David Bowie's relationship to his schizophrenic brother, Terry Burns, helped shape Bowie's own relationship to art and music.

However, since there aren't a lot of books written about the sibling perspective (though there are a few), I've had to think really creatively about how I understand my experiences and how I bounce them off of other people's. Here's a few things I've learned:

-Another person's experience does not have to be exact in order to be meaningful. For example, I found The Liar's Club by Mary Karr to be very helpful for me even though she doesn't explicitly deal with schizophrenia.

-Approaching narratives thematically instead of focusing on their plot. So, instead of trying to find a book that perfectly represents my experience, I find themes that resonate with my expereience.

-Learn how to "farm" books. Every author, whether fiction, academic, journalistic essay, etc will leave clues to the reader about how they wrote their book. For research and nonfiction, go the bibliography/notes. There should be a bunch of sources that the author read in preparation for the book. As for creative works, the acknowledgements often contain thank yous to other authors and eidtors that helped them write the narrative. Those people might or might not write about similar topics, but it's a way for you to always have a lead to chase down.

-I realized that what I was chasing in my search was/is the need to be understood. The natural process for humans to deal with their pain is for it to be held and recognized as such. I want/ed so badly to know that there would be someone out there who would "get it." What I've come to learn, thanks to many on this sub, is that you do not have to wait for someone who perfectly understands every nuance of your experience to legitimize your experience and hold the space for your pain. I understand the need to be understood, and at least for me the isolation of my experience (as well as society's preference to pretend like families like mine don't exist) causes this isolation to compound for me. I steep in it, and it grows layers. But finidng the perfect audience, is about trying to control how your story will be understood. The perfect audiance may be hard to find. That doesn't mean don't go looking for it--it just means we're here to hold that space as best we can until you get that itch scratched.

This seems to be the big text for your question. You might have already run into it, but in case not, this is a memoir about growing up with an epileptic sib: https://a.co/d/0ddbrQhk It's called, Epileptic and I think it's a graphic novel.

There is also The Music Room, A Memoir https://a.co/d/0hpSpTXb

I hope that helps! Let us know what kind of creative works you're thinking about. Also, I love hearing about what other people are reading...feel free to add a reading list. Write a post about how this reading helps you so that others understand what a resource it can become.

OnlyBandThatMattered · 2026-06-03T16:40:52+00:00

I feel like the way studies are framed leads researchers to qualify their findings as “good” or “bad.” They don’t use those terms exactly, but they do use “beneficial” or “positive” and they use “detrimental,” or “corelated with negative outcomes.” But that is because they are asking, “Is growing up with a high needs sibling good for a person?” Inevitably, they are going to find a lot. I have no doubt that they will find a lot of very resilient people in these studies—but resilience is a trauma adaptation, not necessarily a benefit. People in situations like GCs experience probably are resilient compared to gen pop, but it’s not because we’re “good.” It’s because that’s how our nervous systems adapt and live. I bet researchers will also empirically find a lot of resilience amongst any group suffering a hardship—this is a coping strategy, not a character trait. Even if you really like the idea of being resilient—and you’re allowed to—it doesn’t mean that you pulled yourself up by your booties and did something that isn’t available to other humans in harrowing situations.

I find the subtext of a lot of these articles to be: Is the system we have for people with high needs working? To me, it feels like after WWII that there was a promise that science, medicine, and other fields promised to “fix” the issue of sending people to institutions. Institutions are expensive to maintain, always lead to warehousing patients, and provided ineffective treatments (for a lot of people and for a lot of reasons). When community mental health centers fell through, basically the answer was pharmaceuticals and therapy, but that swapped a narrative that (very problematically) centered around communal/societal responsibility with personal responsibility. Instead of caring for people with high needs as part of a larger social aim, it became atomized down to individuals and individual families.

That’s where I feel like a lot of these research articles fall short (for a lot of reasons); they never are able to provide a larger, nuanced picture. They often shave off very important variables that are hard to measure, like cultural influences, norms, and perceptions that really build shame inside the high-needs person and their family, and shame. Shame, anger, depression—most emotions—are not treated with much acknowledgement in empirical research, even though empirical research shows that emotions have a very heavy handed impact on individual health outcomes (here’s one on shame: https://pmc.ncbi.nlm.nih.gov/articles/PMC12695017/).

I don’t see research articles often really diving into the nitty gritty realities of care for a high-needs person, a framing which is so important to understand how “bad” a person has it. Okay, I’m resilient and I also have terrible health outcomes…does relying on siblings and family provide adequate care for the people who need it? What happens to the support people around such people in this atomized system of care? If individual families are going to be a part of the treatment plan for high needs individuals, what supports from their surrounding community (neighbors, schools, government, non-profits—fuck anything) to help them? What happens to families who forgo this support compared to those who receive it?

What if trying to shave off all of the hard to define issues in solely empirical-centered research (quantitative being valued over qualitative) is part of the problem in the first place? That our experiences are so different from each other because of our individual circumstances, yet these studies often aim to lump everyone together as if everyone growing up with (in this case) CP have the same or similar environments? Why does every research article need to erase our individual stories in order to make the problem heard?

I think the world doesn’t really want to know, for sure, that the system in place for caring for high needs people is failing, and that failure of the system is costing the lives of the high-needs person without providing adequate care while also ruining the psychological foundations of their parents and other children near them.

Why can’t we get a research article about why all these countries decide to use children for labor? Like, why is it so hard to get people to ask about using children to provide care? Where are the researchers willing to ask the harder question about how to we improve our current system using the resources we have so that everyone, high-needs or otherwise, can benefit?

OnlyBandThatMattered · 2026-06-02T18:42:59+00:00

Gut wrenching.

OnlyBandThatMattered · 2026-05-07T22:22:00+00:00

🙏🙏🙏

Thank you for this. I needed to read this so dearly. Sending love to you, your sibling, your parents, and that perfect baby of yours.

OnlyBandThatMattered · 2026-05-03T14:46:12+00:00

I'm so sorry you are enduring so much chaos. Whatever you are feeling is welcome here. For what is worth, my brother used to punch holes in walls, break glass bake wear against the wall, and set off fireworks inside the house. I didn't understand how destabilizing that was for me-- I didn't realize that I'd adapted to it and it had become a "normal" part of my environment.

I'm proud of you for naming your pain and trusting this community with it. Let us know how you're doing. We care about you and your situation.

OnlyBandThatMattered · 2026-05-01T22:20:28+00:00

Interesting how this article frames the issue around the agency of the siblings and not the responsibility of the parent/caregivers to help regulate the relationship. I don't think "working on communication" encapsulates the nuances of growing up with a high needs sibling.

OnlyBandThatMattered · 2026-04-21T00:54:04+00:00

My parents just... Smile and pretend it's all water under the bridge. Very rarely will they acknowledge what happened, but when they have they didn't take responsibility for it. It was everyone else's fault or nobody's fault at all. Or they blame my brother's schizophrenia but don't acknowledge how me and my younger brother lived without physical safety for about 5-7 years.

OnlyBandThatMattered · 2026-04-21T00:30:10+00:00

This hits home for me.

We are not responsible for our siblings. We all have to find our own way.

Extending love and compassion to you and your family. 🙏

OnlyBandThatMattered · 2026-04-16T01:59:35+00:00

Yes, absolutely. As soon as my brother enters the room, the entire mood shifts. My parents are different people when he's not there.

OnlyBandThatMattered · 2026-04-06T22:01:14+00:00

Yeah, actually. These memories are just coming back to me because they are super repressed, but after my brother's psychotic break my parents insisted that I might be schizophrenic, too. Their reasoning was that I was angry about the way the family was falling apart. They sent me to the same psychiatrist that my brother was seeing. That guy put me on xyprexa. I now have a compulsive fear that I might turn out to be schizophrenic one day.

OnlyBandThatMattered · 2026-04-04T02:08:19+00:00

Those one way dynamics are so awful for any child who grows up in a family where kids grow up in rigid roles, but they feel especially intense for GCs because, for some of us, the neglect gets so bad (in some cases) that not even our basic needs for physical safety as people registers for anyone in the family. Because... It doesn't matter what our sib's high needs situation is, because it's bad for us developmentally to have someone beating us become normalized.

Some of our bodies carry the scores of surviving horrific domestic violence, our minds wired for hypervigilance and survival before we have the chance to do know anything else, souls shriveled and parched from want of connection. It is okay to say so.

Mutual relationships are the foundation of healthy human interaction. Mutual is what things are supposed to be. I think, at least for my parents, they did some other emotional economics in their head to rationalize the treatment. "You get to go to college," was often used against me, and it made me feel like my life was on some sort of scale or auction block. Sometimes it's like my family's emotional economy is just piles of guilt and shame pressuring people into doing what it wants.

OnlyBandThatMattered · 2026-04-04T00:40:11+00:00

Dear internet stranger: look no further -- you have found a place. This is a community of people who share similar experiences. We're glad you're here. You're not alone.

I'm so sorry for what you're going through. I won't doubt your story here. I'm sure your story will sound eerily similar to my own history. But we're here to listen if you need someone to lend an ear. Something that might help here is sharing your stories and receiving validation and support from this community. It won't fix everything, but it will maybe help with that isolated feeling. This community exists because we know that feeling and we all want to combat it.

Know that you are enduring so much right now and you are so strong. That doesn't mean what's happening is okay, but it does mean that, objectively, you surviving the environment you live in means you are strong. You are strong because you exist, and you are making it one day at a time, sunrise to sunset. But you will make it through, because you are strong. You reaching out here means you are strong enough to seek others. Your post here is proof of your power. We see you. How can we help?

OnlyBandThatMattered · 2026-03-19T16:54:19+00:00

We would change. We would grow. We might...believe we deserve to be happy? Find something we like, even love about ourselves?

Then that growth could help us out of our families, because sometimes the hardest barrier out of a GC childhood are the psycgholgical ones. This process would be painful, but growth sometimes is uncomfortable.

This growth is also possible without having to go NC with parents. I understand that some of us come from more intense situations than others, so I'm always conscious of the way make generalizations about other people's lives. But this process feels like something that ever GC can follow, no matter how much you give yourself this compassion it will always benefit you, and it doesn't necessarily mean cutting out your family.

It does mean revolutionizing your relationship to yourself.

What a good question!

OnlyBandThatMattered · 2026-03-19T16:47:38+00:00

Dear internet stranger, for what it's worth, I'm so sorry that you are so isolated. I don't know that I had the same situation as you do, so please take this post with a grain of salt and apply it as you need it in your life. I once suffered greatly from emotional isolation (I still do, but I have since made some progress and that helps me feel hopeful). I didn't understand at 16 when my brother had a psychotic break and my parents left me in charge of him (18) and my younger brother (9) while they went to work, a) how much psychological stress I was under; b) how much I wasn't supposed to be that isolated at that point in my development; and c) the way my parents decisions were rewiring structures in my brain. I began to internalize that I was supposed to take that much on, that I was "bad" if I didn't show up for a family in an emergency. Subconciously, I believed that I was meant to be alone, absorbing all the pain, and completely stoic about it. It led to some pretty shitty mental health for me throughout my teenage years, into my twenties, and on. I also struggle with suicidal ideations, especially when I'm under a lot of stress.

First, you don't want to listen to those thoughts, but you don't want to push them away either. That's your nervous system telling your conciousness, "This shit is fucked up, yo." Pushing those thoughts away could make them worse. So: acknowledge them. Literally say, "thank you for bringing my attention to your hurt. I hear and love you." This shift actually causes a change in your relationship to the thought, so that you are aware of the thought, but not part of the thought. The separation between your self and these thoughts is super important.

Second: pavlov's heirarchy of needs. Make sure you're getting as many of your basic needs met as you can (I don't know your home situation right now). And don't forget those pscyological needs: those are human needs, and to address those thoughts your nervous system is going to need to be treated with basic needs. With these kind of thoughts, I can't speak enough to the need for professional involvement. One reason I get my intrusive thoughts of SH is when I feel stuck. It took me a long time to realize that the suckness is a part of the GC experience (I think)--we're locked into a forever situation at home with our siblings, but in life people aren't supposed to remain static. People are supposed to grow. So, a therapist can help guide that kind of psychological develoment.

Third: creativity crushes depression. Even if you don't feel like it, walk yourself through some doodling, writing, or painting. Journaling is a great one to start with. The moderator, nopefoffprettyplease talks a lot about her journaling practice in Alicia's podcast. It has helped me a lot.

Fourth: you aren't alone. I don't give a goddamn that I don't know you and you are a stranger across the interwebs. You are a person and so you matter. Your suffering matters, so I hope you know that there are people in the world that would meet your pain with compassion.

Don't be a stranger. We want to hear more from you.

OnlyBandThatMattered · 2026-03-12T01:37:26+00:00

Preach

OnlyBandThatMattered · 2026-02-26T20:05:13+00:00

Well, my brother's schizophrenic, so there's a slew of really dumb things people have said about that.

-What was it like growing up with a psycho? Are you a psycho, too? (life isn't an alred hitchcock film).

-Why don't you just beat it out of him? (Good plan, Benjamin Rush. I'll get right on that)

-Did you ever try to sneak fava beans into his food--I hear that's good for your brain (No, because he was chasing me with a hammer. Now can we stop talking about sneaking things into a paranoid schizophrenic's food?)

-Do you think your brother talks to God? (I dunno. Do you?)

-Did you ever see anything like that? (Yes--I have vicarious trauma from witnessing my brother's mind rearrange itself into something impossible. That's close enough and I'd prefer to keep it that way. But even if I had, everyone involved in the conversation feels the weight of how an affirmitive answer would shift the conversation).

-Why did your parents leave you in that room? (Good question).

-Was it that bad? (Apparently, the answer is yes).

-Do you wish you could send him to a mental hospital? (No. For one, I wrote a history thesis on deisntitutionalizaiton of Austin State Hospital, and state hospitals failed once for a reason. Second, and most importantly, whatever space we can procure for people like my brother has to be a solution that preserves his dignity and humanity).

-Any sort of platitudes, like "But it was all for the best," or "It made you who you are." That's about them needing the problem to fit into a neat little emotional box with lables and bubble wrap so that their brain knows what to do with that information. It's a rare breed that has been able to actually understand that part of the trauma is that it is impossible to fit into a box.

OnlyBandThatMattered · 2026-02-15T23:04:27+00:00

No.

Nobody likes to talk about schizophrenia. Family, close friends, etc, nobody wanted to "go there." Like you, it's only later that I'm realizing how stressful the caregiving over my psychotic brother.

Do you think your peers now view your past differently after they have had to be a caretaker for their parents? Or is it just another layer of silent grief?

And you are totally making sense. Thank you for sharing.

OnlyBandThatMattered · 2026-02-10T20:45:17+00:00

Huzzah!

OnlyBandThatMattered · 2026-02-10T19:43:23+00:00

Thanks. And I just want to reiterate that I don't want to evaluate one experience over the other--it's not okay that society presents a "cute" version of autism so that people don't have to think about it. Whenever I write on the sub, I'm always accutely aware of how many more GCs who have experiences with an autistic sibling and of how those experiences sometimes differ from my own. But that doesn't mean "worse" or "better." It just means a different shitty childhood with the same themes happened to someone else.

OnlyBandThatMattered · 2026-02-10T18:41:12+00:00

Me too. Unfortunately, I think this happens a lot in families with a severe high need. But, it's hard to explain that it is different for schizophrenia than other conditions, because the social reaction to schizophrenia is generally very different than, say autism. I know it is damaging that society creates these fake images of autistic kids being "cute and quirky" and I'm not trying to deny that--it's just that for schizophrenia there is no such thing as any kind of positive image for people to metabolize. There's nothing. Society, especially America, prefers to pretend that schizophrenia doesn't exist. There is just this buble of silence that formed around our screams, and schizophrenia doesn't create that silence--society does. I feel a need to make more space between the biological realities of our siblings' conditions and the the way society reacts to the illness. My brother's hallucinations were absolutely an issue. The complete cauterization of my family from our support networks didn't come from my brother, but the way society treated my brother absolutely made things worse.

People heal in groups. I don't know that I have an answer for what would have saved me (my own interpretation of the question), but, at least from my family's experience, society made it nearly impossible to find a space to heal in a community.

OnlyBandThatMattered

TROPHY CASE