seeking support

[pseudonym]

I've pretty much given up hope that anybody will ever "get" what I'm going through, because my situation and experience have been pretty unique, but I figured I'd give it a shot.

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A lot:
I have a severely mentally disabled sibling. He's entirely nonverbal and unable to communicate or be communicated with in any meaningful way. He's also obsessive-compulsive and routine-oriented, and prone to violent outbursts when routine is broken. He cannot be reasoned with, because he cannot be communicated with. Typically he directs his violence at my mother, father, me or himself. My parents, who both understandably have CPTSD themselves from the situation, get upset if I try to intervene because they fear the state will misinterpret this as abuse, declare them unfit as guardians and put my brother in a facility that will mistreat him (we live in a state where assistance is abysmal and mistreatment and abuse isn't unlikely). My parents have accepted the eventuality that my brother is going to beat my mother to death someday. It has been this way most of my life.

Due to the demanding nature of the situation and the need for adherence to routine, from the age of about ten my needs took a backseat to my brother's, and my role in the household effectively became to stay out of the way and not cause problems. My wants and needs were largely met with exasperation, which trained me to neglect them or take care of them myself, and never ask for help. The best thing I could do in those circumstances was nothing, and I basically spent a decade living like Anne Frank. I developed a debilitating fear of making mistakes, as minor and arbitrary mistakes often lead to violence. It was more important to pretend things were okay than to actually make them okay, so I developed a habit of lying to avoid conflict. I developed hypervigilance to anticipate conflict, and turned to alcohol just to be able to relax and disengage. I escaped into video games and fiction. I was not allowed to tell anyone how bad the situation was, because my parents feared CPS would take my brother away.

When I was fifteen, an authority figure at school showed concern for my well-being, but either through incompetence or adherence to protocol, when I admitted passive suicidality she had me involuntarily committed to a psych ward over Christmas. The psych ward was a joke, over the course of two weeks I spoke to a single mental health professional for fifteen minutes who was a pharmacologist only interested in prescribing me an SSRI and maximizing throughput, and I was effectively advised to pretend to get better. This experience absolutely demolished my ability to trust or accept help, especially from authority figures and mental health professionals.

Following this and other experiences of failed intimacy, I essentially gave up on anybody ever understanding. I sectioned off the parts of myself that were vulnerable and built walls around them, and constructed someone charming and funny and interesting to present to people instead. I turned to romantic love and sex, and more broadly approval and admiration, to replace the love I didn't get. Eventually I started actually taking the SSRIs and they gave me the push to fake my way through education and employment, albeit with nearly debilitating anxiety to the point of health problems. I moved out in my early twenties, and although it took years of living on my own, I was able to unlearn some of the behaviors from my childhood: I stopped lying, developed a strong moral compass, and distanced myself from escapism, although the debilitating fear of making mistakes remained, as did the hypervigilance, and with it the drinking -- though I didn't recognize any of this as PTSD or even abnormal at the time. I was able to maintain a healthy relationship, and felt loved and able to love and be somewhat vulnerable for the first time, though still not fully.

Then in my mid-to-late twenties, still not aware or willing to admit that I was traumatized, I made the mistake of believing I was stable or strong enough to reenter the circumstances that traumatized me. My brother's health declined, as did both my parents, and I began taking care of him in their home -- my childhood home -- part time, getting paid by the state to do so. Without being aware of it, I slipped back into all the behaviors I had unlearned. Any walls I had torn down were built back up, I regressed into pretending to be okay and avoidance and escapism and self-neglect, and eventually full-blown alcoholism and infidelity. I destroyed my relationship and lost everything.

I have since undergone a period of serious self-reflection. I quit taking care of my brother, quit drinking, and started attending counseling. For about six months I lived in my car, self-isolating and treating my mental health like a full-time job. I looked into a number of different hypotheses before eventually coming to terms with the fact that I have CPTSD.

Unfortunately, now that I'm equipped and motivated to address it, I have nowhere to stay except with my family of origin. Living in my car is no longer viable, and I don't view any of my former friends or family as any less detrimental to my mental health for a number of reasons. I haven't been able to hold a job for more than a few months without falling apart because I'm in limbo between tearing down the walls I built up to fake my way through adult life and actually healing enough to integrate meaningfully into society.
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I'm currently nine chapters into CPTSD: From Surviving to Thriving by Pete Walker, and it's been helpful in a lot of ways. Much of it aligns with conclusions I arrived at independently, and many of the prescriptive elements match up with things I've already been doing that have proved helpful (running, meditation, breath work, progressive relaxation). Still, much of it refers to situations that are incompatible with mine, specifically in that:

- my situation is ongoing, and

- there's nobody to blame.

I really believe my parents did their best. Our lives just suck anyway.

I'm not really sure what I'm looking for here. I guess understanding. One of the benefits I've experienced in drug and alcohol recovery groups is the company of people who understand a struggle most don't. It feels like I've spent my whole life working on something most people never have to, with nothing to show for it; like I'm running miles just to get to the starting line. And even if I get there -- if I manage to separate myself from the situation and recover -- it's incredibly difficult to care about personal pursuits when the people I care about the most, and the only people who understand what I had to go through, are miserable, and probably always will be, and there's nothing I can do about it. It's incredibly difficult to be pro-social towards a society that frankly hasn't done me any favors, and concerns itself with frivolities farther up the hierarchy of needs than I've probably ever been.

Anyway thanks to anybody who read all this, believe it or not it's the short version.

[Papa Coco]

Pseudonym,

Welcome to the forum. Your "short version" is very well written. While I did not experience being the healthy child in a family with a disabled sibling, I have heard others tell similar stories to yours. You articulate your experience very well.

That being said, your reactions to the circumstances of your life line up well with the reactions most of us with CPTSD have to our pasts. I have noticed that we all have different backstories, but somehow we all ended up here, and Pete Walker's book describes all of us similarly.

As you interact with the beautiful people on this forum, I hope that some of the members will be able to better relate to your family story. But even those of us who didn't experience the same family structure, will be able to relate in many ways to how it guided you to feel how you feel today.

You said, "I'm not really sure what I'm looking for here. I guess understanding." That's huge and it's absolutely available. Even for those of us who can't fathom the struggles of having a violent non-verbal sibling, almost everyone here struggles with the same set of trauma disorders. It's absolutely the same reason I came here 3 years ago, and I found it. I suspect you'll hear others say the same thing.

We humans were designed to rely on each other for support and safety. That's pretty much the mission of this community and what drew most of us in. I'm very glad you found this community and I sincerely hope you find what you are looking for here.

Welcome, and I hope you find the understanding that you are reaching out for. The compassion and empathy on this forum help a lot to soothe that old feeling of being alone with our feelings.

[Kizzie]

Hi and a warm welcome to OOTS pseudonym.  I absolutely do get all that you are saying (and it wrenches my heart as do other members stories). Although I did not have a disabled sibling my family were narcissists.  You can't connect with them no matter how hard you try (because they're not really in there), and if you step outside the tight set of rules about how to behave you will encounter N rage. It's similar to what you have gone through in that nothing you do can make things any better, except stepping away.

I live in Canada so I'm not familiar with the healthcare in the USA but would it be possible to find you brother a placement in a safe and caring facility in another state? It might mean a move for your parents or you so they or you are resident and he can go to a much better facility. I know it's a lot but the common denominator here is your brother and until he's taken care of all of you will continue to suffer. 

It's similar to those of us who have abusive families and we choose to go no contact so we can have a healthier life. Very difficult but in some cases it's not really a choice.  Stay in the situation and become less healthy or step away and build a better life.

Just my thoughts. 

[NarcKiddo]

Welcome, Pseudonym.

I am very sorry to read that you and your needs took a back seat to everyone else's. It is very hard to unpick a situation where you truly believe your parents did their best. I think that is what a lot of us grapple with to some degree, if we have had a traumatic childhood, because it absolutely does not follow that someone's best is in any way good enough. I would never suggest you blame your parents in any way - whether you do now or in the future is entirely up to you. The family situation is very difficult. But I would strongly encourage you to consider the fact that you deserved better even if they were not capable of giving you better. Now you are an adult you are the person responsible for giving yourself better.

You deserve a healthy life. There is a reason they tell you to put your own oxygen mask on in a plane before helping others. I am sorry to hear that you feel your only current option is to live with FOO, given how badly that has tended to go for you in the past. But in the meantime you have made progress. You have realised you likely have CPTSD. You have taken steps towards healing. You seem to be aware of what areas you find difficult. That should stand you in good stead.

But please, Pseudonym, remember to put your oxygen mask on before helping others.

I am glad you found this forum and wish you all the best for your healing journey.

[pseudonym]

Well I'm back.

I struggled to revisit this posting and this forum for a long time because I don't really have a place where I feel safe being vulnerable and opening myself up to the emotions that it entails. I hope to be better about that this time since I know I would benefit from being a part of this community, but I do most of my mental health work in cafes where I don't exactly feel comfortable breaking down, so who's to say.

My thoughts are less gathered and narrativized this time so forgive the rambling and bouncing around.

Things got worse. My dad died unexpectedly in August, and now I'm pretty much in the position I always knew was coming and have been dreading most of my life -- helping my mother take care of my brother, the source of all of my trauma and resentment.

I am fortunate in that I have had the awareness and mindfulness to set a boundary between doing things to help make my mom's life easier/better, versus directly caring for or taking responsibility for my brother. I cannot allow myself to make that concession, both because of what it would mean for my life, but also because it would be frankly unethical: I do not love my brother, I do not like my brother, and my life and the lives of my loved ones would be objectively better if he died. So I cannot be entrusted with his wellbeing, it's a blatant conflict of interest. Which has honestly made things easier, having a clear and objective reason to govern what I can and cannot let myself do.

But on top of everything else there's now a sense of unwanted responsibility, because the violence continues, and now there's nobody to put a stop to it but me. I feel guilty leaving them alone, and it preempts a lot of the things I'd like to be pursuing -- gainful employment, cultivation of marketable skills, and obviously recovering from trauma. We're fortunate enough to be financially stable for the time being, but I am plagued by fear that I'm going to come home to my brother standing over my mother's corpse, and then I'll be completely alone, with nothing to show for the time spent. It occurred to me in retrospect that I've spent my entire adult life waiting for this problem to resolve itself so that I can have parents again, and that that might never happen. As it stands I'm trying to get my mom to see reason, trying to find the appropriate amount of pressure to apply to get her to abdicate and relinquish care of my brother while she's alive to direct and ease the transition. Which is slow and painful but seems to be progressing. In the wake of my father's death I asked her what the long-term plan for his care is and she effectively described murder-suicide, which I told her in no uncertain terms I am not okay with, and that seems to no longer be the plan now, so that's good. It is also no longer expected that I will be in charge of his care, so that's good too. Things are getting better, slowly; it's now a question of whether my mom will also die in the process, or if she'll acquiesce to a few years of peace first.

Obviously my attempts at recovery have taken a backseat in the last 9-10 months. Prior to my father's death, the counselor I was seeing essentially told me that she didn't think I have PTSD and that I should stop caring about my family, which told me everything I need to know about what her services were worth. I haven't felt up to the task of spilling my guts out for another mental health professional in the hopes that they'll "get it", but when I do I'm going to look for someone who has experience with CPTSD and is willing to work with me within the context of my situation with evidence-based practices, rather than being a glorified journal. It is no longer an option for me to divest myself from the situation and seek traditional recovery; the circumstances that prompted the adaptations that are considered maladaptive in normal society persist, so I need to either find coping strategies that are applicable to both my specific circumstances and general life, or figure out how to effectively context-switch between the two.

I also started taking an antidepressant again (Bupropion, an NDRI, which I've been on before) which has allowed me to function and refrain from shooting myself, but has made my thought processes markedly more task-oriented, which has made introspection and mindfulness and emotional awareness a lot more difficult.

On the bright side, I am still sober, and have mostly refrained from using sex and love as a crutch. I've reconnected with some friends and family and have a better support network now. And after my experience with the counselor I've gotten a lot better at trusting my own judgement -- I don't know the way out of my situation, but nobody else does either, and I certainly have a better understanding of it than they do. In spite of it all, I think I'm in a better place mentally than I was a year ago, if nothing else.

On the days that I feel up to it, I've been reading about coping mechanisms, polyvagal theory, and self-verification theory. I stretch, meditate and journal most days. And try to find ways to live in spite of life.

Thanks for the replies, and for reading. Hopefully I'll stick around this time.

[NarcKiddo]

Welcome back. I think you are doing everything so well in the face of these horrendous challenges. I am glad to read that there is no longer an expectation that you will eventually become your brother's carer. When you are ready to seek another therapist I hope you find someone suitable and helpful.

[Hope67]

Welcome back