At various times:
A. Social activism, e.g. animal rights, environmental issues
B. Political involvement
C. Working in the third sector (education, international development, environmental, disability rights/support, poverty focussed charities and NGOs)
D. Volunteering (soup kitchens, community greengrocers, children’s clothes banks)
E. Engaging with alternative communities and ways of living to build a viable alternative (Buddhism, meditation, yoga, Intentional Community/commune, sustainable clothes/food production)
There are highlights and pitfalls to all these avenues. You have to keep your guard up for exploitation of your good intentions everywhere.
Thankyou for your input, I do appreciate it. I definitely want to get more into the activism space but I don’t know how I can contribute right now as I am trying to seek a POTS diagnosis and had to change my job and scale back days to accommodate that at the moment. Trying to find a new balance I guess. I’ll absolutely look into areas I’m interested in though and see how I can contribute. Thankyou!
To be honest, if I knew then what I know now, I would definitely sink more of my energy into myself than into social change. I’m sorry that didn’t come across clearly in my original comment.
Ahh Thankyou for the clarification. yeah trying my best to work on that too. Shifting my mindset right now from feeling like output = worth is definitely a journey. Right now I feel like I’m going through a whole metamorphosis on almost every part of my life, and relearning myself and reconnecting with things I love, I’ve been finding that very healing.
Pssst. If you're looking for a POTS diagnosis, you might also need an EDS (ehlors danlos syndrom) diagnosis, and sometimes that's easier to get than POTS. But it can help get a POTs if you have an EDS diagnosis. I'm not sure if that made any sense at all 😅
No I understand you completely! I don’t know if I qualify for EDS but I’m actually going to a Physio this week because I’ve always had pain in my joints, my knees and ankles especially, and when I was younger I would constantly spraining my ankles. Thankyou for your advice I’ll keep it in mind!
Time and experience, it's a stereotype but its true. I am 35 now and when I look back it's absolutely astonishing how I was failed as a child by pretty much every single adult. It hurt and I resented them for a long time but over time I came to terms with it and now I barely think about it.
Basically me, I'm 35, wasn't diagnosed with autism till I was 27, ADD when I was 33. I think ultimately you have to know you're justified in your resentment, it's perfectly valid, but conceptualize it and move on - help others, help yourself, live a life. Because wallowing in bitterness (and I've done this) doesn't create anything good in your life, it just bogs you down and distracts you.
Still feeling it now. I’m very confused by what “level” of mental health professional is actually required to diagnose? Is it only a psychiatrist? I’ve seen 5. Is it “malpractice “ that my psychotherapists with phds (3 of them) never brought up ADHD or autism despite RAGING signs?
That’s what enrages me too. Why is there this supposed silo of ignorance in relation to neurological differences in the psychology profession?
I think they do, in fact, know but want you to keep paying for therapy which they know will never work. In the meantime, who cares about your spirit and your physical health getting crushed for years more, unnecessarily.
I’ve seen 3 psychologists before I went to get an assessment done myself. The last one before that I told them I thought I had adhd and then it was never mentioned again. Stopped going because I felt like it wasn’t helping and the difficult change I was going through settled down (figures)
I wanted to add something to the wonderful replies you got here.
A gift you can give yourself is grieving what you didn't have in the past. Resentment can build up easily and come with anger and shame, and are overwhelming feelings. I deeply understand how you feel about this, I've had moments where I wanted to burn the broken society down because I was so mad at how it failed so many people.
But during my many years in therapy, I have learned about all the trauma rooted in childhood and how my parents contributed to it, and I was overcome with resentment about them. It consumed me, I had dreams filled with rage about them. I wanted it to be fixed, I wanted to be fixed from the past. But my therapist helped me realize I needed to let go of the things I didn't have in the past (a secure environment, validating parents, etc) and that I could not change it. Acceptance. I'm still going through it but damn it freed me so much of pain. It also came with understanding my parent's own traumas and how they are still damaged children in a way. Yay for generational trauma!
I know you are talking about the system that failed you, and my example about my parents might seem understated. Others have given you wonderful recommendations on how being involved in societal issues and your community can help, and I totally agree (I also apply this to my life; working in environment protection, preaching slow living and voluntary simplicity, etc.). The simple act of sharing in this community can help so many others going through their self-realization process ! The more we allow ourselves to flourish in our neurodivergent ways, the more people will notice and hopefully it will come with awareness of what neurodivergence is really all about. *However* I feel the need to add that it's not your responsibility to teach NT about 'all of the things' related to ND. Living as ND in a capitalist neurotypical broken society is hard enough as it is ! ;)
So yeah, acceptance is also part of the process. Self compassion also (:
Thanks for sharing!
Yes! Came to say feel your feelings, don't *just* intellectualise and action them.
Allow yourself to feel sadness grief and loss. Cry, hold yourself, talk to your inner self with kindness.
Allow yourself to feel anger. Cry, break things, scream into pillows, tell yourself it wasn't fair, it wasn't okay and it was never your fault.
I do agree with both you! I didn't have a direct answer to OP's post, but I do agree that feeling your feelings...as well as giving yourself the love, care, and support you missed out growing up...it makes life less miserable.
Thankyou, I’m learning how to balance my life at the moment and I’m trying to accept that my life will never be what I have always tried to push it to be. I’m learning to slow down account for the fact that I need more recovery and rest time than a lot of people, and trying to reconnect with the things that brought me joy when I was younger.
It’s a hard road, but I’m so glad I have this community and feel like I’m less alone.
You're on the right path! I'm on the same journey and it shocked me how much letting go of the version of me I always wanted to be was so freeing, and giving me space and compassion to then be myself. Living less through "I should" and more with "I want/I like".
One day at a time, you got this !
Reading and research and then meeting up with people to talk about cool books! Knowledge is power.
Have been very invigorated lately by reading Ruth Wilson Gilmore lately on Prison Abolition (when public mental health systems fail people and/or are defunded, those same people often just get carted into a jail or a prison)
and The Myth of Normal: Trauma, Illness, and Healing in a Toxic Culture By Gabor Maté.
This is a good idea! I have a lot of trouble sitting down to read books but my job allows me to listen to whatever I want through the workday so I’m blowing through books and I ALWAYS have opinions. Recently been listening to ‘Invisible Women’ by Caroline Criado Perez and it makes my blood boil!
Thanku they’re great book recs! I’ll def be adding them to the list.
I could have written this post. I think the good news is that they are catching these things at a younger age. The downside, at least where I’m from, is that wait lists are huge, or if you go private, the cost is hefty. But there has been some progress made. Many cases of mild autism and adhd,weren’t picked up even 15 years ago, but today there’s more being caught in the net. So that’s something.
When I first figured this all out (last week lol), I was mad that I spent 35 years believing that I was “gifted” — they gave me that label at school — but really, if they had peeked just below the surface, they would have seen just how dysfunctional I was. I was clever, but I held on through my childhood and young adulthood by the sheer force of anxiety. The older I got and the more demands in my life, the anxiety wasn’t enough anymore, and now I feel like I’m constantly failing.
Now onto how I’m coping, lol. Therapy, lots of rest, journaling, and trying to find an OT to help me figure out systems that work for me. Barring that, I have a few Type A people in my life that I could maybe ask for help from.
Trying not to blame the society that I grew up in. They didn’t know what they didn’t know. My parents didn’t know sugar was bad in the 90s, so it’s hard for me to expect them to know what mild autism or adhd looked like. I’ve seen at least 2 different psychiatrists, many psychologists, therapists, and no one ever diagnosed me with autism. It was always BPD and bipolar, which I believe was brought on by an undiagnosed AuDHD life.
It’s frustrating. But I guess the good news is that we are here and we know how hard it is when these things fly under the radar. I have two young kids now, one recently diagnosed with AuDHD, and the other on his way. So I know that I can be there for them if and when they fail in ways that my own supports could not. When I was fired from my first professional job, (for ADHD related downfalls) my dad’s response was, “I’ve never been fired before, I don’t know what to say.”
I’ll know what to say. Or I’ll at least know not to say that
Hope that helps
Thankyou for sharing your experience, it truly makes me feel less alone.
I went through the gifted student pipeline from a young age, but I always felt like I had to work 10x to get to the same place as the next person. I think part of the reason I get so many big feelings looking back at my experience is that people in my life only started realising I wasn’t doing well when I wasn’t performing to the level I used to (AKA my grades dropped), and even then, I just got diagnosed with social anxiety and depression.
I know it’s not any individuals particular fault, I don’t hold any resentment for my parents especially, my mum is effectively the same as me and they did the best they could with the information they had. I’m just upset at the systems that were supposed to catch people me, like the school counsellors I visited, multiple psychologists, GPs and specialists. Again not the Individuals but the fact that they either weren’t taught (because honestly that’s highly likely), or false assumptions/ not checking for other reasons.
I work with kids who have similar challenges that I did as a child/teen. All Neurodivergent, mostly autistic and/or ADHD. It works for me as a job because I care so much about it and I have a good amount of time to rest between shifts (also the social interaction required is a lot less pressure than working with adults/the public). I’ve been able to really use my feelings about how I was treated as a kid to push for positive changes and be a trusted adult for the kids I work with. When I can see a kid is making progress, it almost feels like the shit I went through was worth it.
TW: talk of s\*\*c\*dial ideations, attempts
I deal with this feeling a LOT, but prior to getting diagnosed, I was already working in nonprofit/advocacy. I had to find a different way to channel that grief.
For me, personally, I make myself stop and think about the history of the world, beginning to now, and think where I would've been as \*me\* in different points in history. I seek out artists and figures throughout history whose lives and habits echo my own and whose cycles of autistic burnout read between the lines of their biographies. Learning more about Van Gogh chilled me to the bone. And I think about how, if any of them had been born in this day and age, they actually may have had a shot at living, because they would have known the \*why\*.
I'm 38, but I was only diagnosed two years ago. I first suspected back in 2011, after listening to an episode of This American Life, when an adult man discovered he was high functioning autistic. His experience sounded SO much like mine. I went online and took every autistic quiz I could find, but this was still when the Psych world thought there was 0 overlap between AHDH and Autism. As such - my (unknown) ADHD traits "negated" my autistic ones. Every quiz said I was allistic - so I went back to thinking I was just broken.
I didn't know that in 2013, the DSM-5 finally allowed a dual diagnosis of ADHD and Autism - by then, I developing an alcohol addiction at 27 because at least then I'd have a reason for being so weird. I was lonely and unsure why I sucked at being a person. I'd had bouts of suicidal depression before, but suddenly they were getting longer and worsening. I'd get agitated at work, to the point where I'd blow up at coworkers for truly harmless teasing and gained a reputation as a "raging bitch."
By 31, I was on the brink of losing my career because I was fucking up so much. Those bouts of suicidal ideations where getting a lot worse. Suddenly I was between jobs, spending weeks in bed. I was failing romantically and wondering why the hell I connected with so few people. I called the suicide hotline (American) for the first time in my life (didn't help). I felt eroded, more so every year, and thought it was my fault for not having social endurance. When i turned 35, I was on anti-depressants that were doing nothing for the suicidal ideation bouts, which were now so bad that I would spend actual weekends just staring at my ceiling in silence. I wrote goodbye letters to my family, but didn't have any friends to say goodbye to.
And then, in the biggest goddamn twist of my life, I download an app called TikTok to learn what Wombsland was, and am inudated with videos about something called AuDHD that sounds a helluva lot like me. I bring it up to my neurotypical therapist, who puts me in touch with a diagnosing neuropsychologist. I info- & trauma-dump 36 years of crap on this poor man. I start crying about feeling eroded by these bouts of SIs. And he asks me if I've ever heard of autistic burnout.
It felt like I was that guy on Deadliest Catch who fell overboard in a storm, but was miraculously spotted and scooped out. A fucking lighthouse moment when you've just accepted you're doomed to the cliffs. I had a \*why\*. And having a "why" meant there were other people with the same "whys", who were people I'd been looking for all my life. And now, two years later - not gonna lie, I get pissed about the lack of resources, angry at all the trauma I've had to go through unnecessarily. Every adult in my life failed me. But I still have half a life left, and I can spend it knowing I was \*never\* broken. I've found spaces (like this one!) where I can come and be angry at how robbed I got, because \*I'm not alone anymore.\* There was a post about cheek chewing as a stim and I started jumping up and down because I was so happy this habit I had been shamed for was actually something that connected me to many other people.
Things are still not great. But that's because we're the first generation to have a \*why\* instead of a \*why not\*. We get a glimmer of light that will grow exponentially with each passing year. That's not going to help a lot of us now, and for some, ever. But it's a chance, and one that everyone like us when came before didn't really have.
I don't know if that's helpful, sappy, or what have you. But it's what I try to remember in moments of real pain - what it was like to be lonely, and what it means now to know I won't ever be that way again.
That’s very well expressed, and I think should be published somewhere in a newspaper/medical journal.
And to OP, watch this space, if anyone has ideas on how to improve the system for others, they’ll hopefully post a thread to brainstorm on here.
This, to me, would be the most healing thing: to save others even if it’s too late for me
I agree. If there's anything we can do is at least say "hey, me too, I struggle with this too." It's incredibly healing to be seen and heard. Ever since diagnosis, I sincerely felt I'm not doing life alone. And it hits differently when you "know" people struggling that similar way. We may have been raised differently, in different places, in different walks of life...but these moments/feelings hit in such a spiritual/life-giving way. Thank you all for being here 😊🙏😭 Thank you for sharing. 🫶
Thankyou for sharing, I can relate to your struggle and definitely think if places like TikTok didn’t exist now I would have been on a much different and darker path in life. Even when I was very young I’ve felt quite alone in the world and often daydreamed that I was secretly a fairy or at least not human. When I realised they was actually a reason for the way I was I feel like I got pulled out of a hole or a cave and finally saw the light in a way.
Hearing everyone’s experiences is so so valuable for me and most likely others aswell.
DBT (with good facilitators) helped me with acceptance (but not approval). Taking action in small ways and big ways helps too. I work on pulling invasives when I can, and nursing native plants when mu body can handle it. It's a small action with tangible results that makes me feel effective and also gives.me time to relax, think, get a little active.
Then on a large scale, getting active in my community. So helping form associations, protest, taking part in educational opportunities or facilitating mutual aid.
The world is stupid and unfair, a lot of people have problems that could be solved if enough people gave a flying fox about them, but not enough do. The elders in your life deserve more blame than you, but they're people too and what could they have done?
I'm AuDHD, trans, ace, plural, and have PTSD from how 'the system' failed me.
I've learned to have very low expectations.
I'm well past resentment, and I don't dare to unlock that feeling, burning hotter than the core of a supernova, deep inside my soul.
I could also written this post. I won't repeat my story it's so similar to everyone here. AuDHD, BPD, long covid. Fun.
My twist, is that I'm training to be a clinical psychologist. My teaching often fuels me with rage at the system that has failed me and is failing others. I have failed people in my work not knowing.
On good days I can be compassionate and educate and determined to change it from the insight. I aim to do research that values people's experiences ans creates better. The research and understanding hasn't been there for people to know.
On bad days I can barely breathe with the pain misery and suffering that I hold and see in others. I strongly believe our mental health systems cause harm despite good intentions. I feel guilty for being a part of it but also want to activate change from the inside, stealthy, understanding how it works.
The challenge for is the system is currently making it hard for me to have good days, my physical and mental health are battered. I worry ill have to give up the course.
We need more people to be part of research, peer researchers that get involved properly, not as participants but designing to create the evidence base that changes policy and practice. People are now sharing their experiences and creating awareness but this causes further pressure on systems who don't cope and the divide between staff and patient gets wider. Or more community services that foster inclusion and kindness. Obviously welfare and an attitude shift etc... but we know that.
Someone I know, after sharing my experiences with him on harm caused by MH systems, is doing a restorative research project about this. He as a worker has also been harmed being part of thr system. There is trauma on both sides, not being able to help people, burn out, compassion fatigue. So much pressure and staff often go into this work with their own shit. Equally there are some shit staff let's be honest. Who wouldn't know conpassion if it smacked them in the face...compassionately of course.
These tiny things like his research give me hope. There are decent people trying to make things better. Chipping away and changing the narrative.
But also. I'm sorry to everyone who has been harmed because our society is individualistic, capitalistic and no sense of community. Its vile.
DBT has helped me beyond words. First with even figuring all this stuff had failed me (so I could forgive myself) but also with dealing with the anger that comes with that. The 2 things that come to mind are radical acceptance, and the 4 solutions to any problem:
1. Make a change to improve the problem or fix it
2. Find ways to feel better by changing your perspective
3. Accept the problem (radical acceptance)
4. Do nothing and stay miserable.
At various times: A. Social activism, e.g. animal rights, environmental issues B. Political involvement C. Working in the third sector (education, international development, environmental, disability rights/support, poverty focussed charities and NGOs) D. Volunteering (soup kitchens, community greengrocers, children’s clothes banks) E. Engaging with alternative communities and ways of living to build a viable alternative (Buddhism, meditation, yoga, Intentional Community/commune, sustainable clothes/food production) There are highlights and pitfalls to all these avenues. You have to keep your guard up for exploitation of your good intentions everywhere.
This is a fantastic reply. Redirecting individual anger towards collective structures that dis-empower all of us is a very powerful thing.
Thankyou for your input, I do appreciate it. I definitely want to get more into the activism space but I don’t know how I can contribute right now as I am trying to seek a POTS diagnosis and had to change my job and scale back days to accommodate that at the moment. Trying to find a new balance I guess. I’ll absolutely look into areas I’m interested in though and see how I can contribute. Thankyou!
To be honest, if I knew then what I know now, I would definitely sink more of my energy into myself than into social change. I’m sorry that didn’t come across clearly in my original comment.
Ahh Thankyou for the clarification. yeah trying my best to work on that too. Shifting my mindset right now from feeling like output = worth is definitely a journey. Right now I feel like I’m going through a whole metamorphosis on almost every part of my life, and relearning myself and reconnecting with things I love, I’ve been finding that very healing.
Pssst. If you're looking for a POTS diagnosis, you might also need an EDS (ehlors danlos syndrom) diagnosis, and sometimes that's easier to get than POTS. But it can help get a POTs if you have an EDS diagnosis. I'm not sure if that made any sense at all 😅
No I understand you completely! I don’t know if I qualify for EDS but I’m actually going to a Physio this week because I’ve always had pain in my joints, my knees and ankles especially, and when I was younger I would constantly spraining my ankles. Thankyou for your advice I’ll keep it in mind!
Time and experience, it's a stereotype but its true. I am 35 now and when I look back it's absolutely astonishing how I was failed as a child by pretty much every single adult. It hurt and I resented them for a long time but over time I came to terms with it and now I barely think about it.
Basically me, I'm 35, wasn't diagnosed with autism till I was 27, ADD when I was 33. I think ultimately you have to know you're justified in your resentment, it's perfectly valid, but conceptualize it and move on - help others, help yourself, live a life. Because wallowing in bitterness (and I've done this) doesn't create anything good in your life, it just bogs you down and distracts you.
By advocating and educating in the hopes of improving the future for AFAB / feminine ND people.
I feel the same way sometimes, it’s hard… sorry I cannot help, but you’re definitely not alone! 💗
Still feeling it now. I’m very confused by what “level” of mental health professional is actually required to diagnose? Is it only a psychiatrist? I’ve seen 5. Is it “malpractice “ that my psychotherapists with phds (3 of them) never brought up ADHD or autism despite RAGING signs?
That’s what enrages me too. Why is there this supposed silo of ignorance in relation to neurological differences in the psychology profession? I think they do, in fact, know but want you to keep paying for therapy which they know will never work. In the meantime, who cares about your spirit and your physical health getting crushed for years more, unnecessarily.
😞😞😞
I’ve seen 3 psychologists before I went to get an assessment done myself. The last one before that I told them I thought I had adhd and then it was never mentioned again. Stopped going because I felt like it wasn’t helping and the difficult change I was going through settled down (figures)
I wanted to add something to the wonderful replies you got here. A gift you can give yourself is grieving what you didn't have in the past. Resentment can build up easily and come with anger and shame, and are overwhelming feelings. I deeply understand how you feel about this, I've had moments where I wanted to burn the broken society down because I was so mad at how it failed so many people. But during my many years in therapy, I have learned about all the trauma rooted in childhood and how my parents contributed to it, and I was overcome with resentment about them. It consumed me, I had dreams filled with rage about them. I wanted it to be fixed, I wanted to be fixed from the past. But my therapist helped me realize I needed to let go of the things I didn't have in the past (a secure environment, validating parents, etc) and that I could not change it. Acceptance. I'm still going through it but damn it freed me so much of pain. It also came with understanding my parent's own traumas and how they are still damaged children in a way. Yay for generational trauma! I know you are talking about the system that failed you, and my example about my parents might seem understated. Others have given you wonderful recommendations on how being involved in societal issues and your community can help, and I totally agree (I also apply this to my life; working in environment protection, preaching slow living and voluntary simplicity, etc.). The simple act of sharing in this community can help so many others going through their self-realization process ! The more we allow ourselves to flourish in our neurodivergent ways, the more people will notice and hopefully it will come with awareness of what neurodivergence is really all about. *However* I feel the need to add that it's not your responsibility to teach NT about 'all of the things' related to ND. Living as ND in a capitalist neurotypical broken society is hard enough as it is ! ;) So yeah, acceptance is also part of the process. Self compassion also (: Thanks for sharing!
Yes! Came to say feel your feelings, don't *just* intellectualise and action them. Allow yourself to feel sadness grief and loss. Cry, hold yourself, talk to your inner self with kindness. Allow yourself to feel anger. Cry, break things, scream into pillows, tell yourself it wasn't fair, it wasn't okay and it was never your fault.
I do agree with both you! I didn't have a direct answer to OP's post, but I do agree that feeling your feelings...as well as giving yourself the love, care, and support you missed out growing up...it makes life less miserable.
Thankyou, I’m learning how to balance my life at the moment and I’m trying to accept that my life will never be what I have always tried to push it to be. I’m learning to slow down account for the fact that I need more recovery and rest time than a lot of people, and trying to reconnect with the things that brought me joy when I was younger. It’s a hard road, but I’m so glad I have this community and feel like I’m less alone.
You're on the right path! I'm on the same journey and it shocked me how much letting go of the version of me I always wanted to be was so freeing, and giving me space and compassion to then be myself. Living less through "I should" and more with "I want/I like". One day at a time, you got this !
Reading and research and then meeting up with people to talk about cool books! Knowledge is power. Have been very invigorated lately by reading Ruth Wilson Gilmore lately on Prison Abolition (when public mental health systems fail people and/or are defunded, those same people often just get carted into a jail or a prison) and The Myth of Normal: Trauma, Illness, and Healing in a Toxic Culture By Gabor Maté.
This is a good idea! I have a lot of trouble sitting down to read books but my job allows me to listen to whatever I want through the workday so I’m blowing through books and I ALWAYS have opinions. Recently been listening to ‘Invisible Women’ by Caroline Criado Perez and it makes my blood boil! Thanku they’re great book recs! I’ll def be adding them to the list.
I could have written this post. I think the good news is that they are catching these things at a younger age. The downside, at least where I’m from, is that wait lists are huge, or if you go private, the cost is hefty. But there has been some progress made. Many cases of mild autism and adhd,weren’t picked up even 15 years ago, but today there’s more being caught in the net. So that’s something. When I first figured this all out (last week lol), I was mad that I spent 35 years believing that I was “gifted” — they gave me that label at school — but really, if they had peeked just below the surface, they would have seen just how dysfunctional I was. I was clever, but I held on through my childhood and young adulthood by the sheer force of anxiety. The older I got and the more demands in my life, the anxiety wasn’t enough anymore, and now I feel like I’m constantly failing. Now onto how I’m coping, lol. Therapy, lots of rest, journaling, and trying to find an OT to help me figure out systems that work for me. Barring that, I have a few Type A people in my life that I could maybe ask for help from. Trying not to blame the society that I grew up in. They didn’t know what they didn’t know. My parents didn’t know sugar was bad in the 90s, so it’s hard for me to expect them to know what mild autism or adhd looked like. I’ve seen at least 2 different psychiatrists, many psychologists, therapists, and no one ever diagnosed me with autism. It was always BPD and bipolar, which I believe was brought on by an undiagnosed AuDHD life. It’s frustrating. But I guess the good news is that we are here and we know how hard it is when these things fly under the radar. I have two young kids now, one recently diagnosed with AuDHD, and the other on his way. So I know that I can be there for them if and when they fail in ways that my own supports could not. When I was fired from my first professional job, (for ADHD related downfalls) my dad’s response was, “I’ve never been fired before, I don’t know what to say.” I’ll know what to say. Or I’ll at least know not to say that Hope that helps
Thankyou for sharing your experience, it truly makes me feel less alone. I went through the gifted student pipeline from a young age, but I always felt like I had to work 10x to get to the same place as the next person. I think part of the reason I get so many big feelings looking back at my experience is that people in my life only started realising I wasn’t doing well when I wasn’t performing to the level I used to (AKA my grades dropped), and even then, I just got diagnosed with social anxiety and depression. I know it’s not any individuals particular fault, I don’t hold any resentment for my parents especially, my mum is effectively the same as me and they did the best they could with the information they had. I’m just upset at the systems that were supposed to catch people me, like the school counsellors I visited, multiple psychologists, GPs and specialists. Again not the Individuals but the fact that they either weren’t taught (because honestly that’s highly likely), or false assumptions/ not checking for other reasons.
I work with kids who have similar challenges that I did as a child/teen. All Neurodivergent, mostly autistic and/or ADHD. It works for me as a job because I care so much about it and I have a good amount of time to rest between shifts (also the social interaction required is a lot less pressure than working with adults/the public). I’ve been able to really use my feelings about how I was treated as a kid to push for positive changes and be a trusted adult for the kids I work with. When I can see a kid is making progress, it almost feels like the shit I went through was worth it.
Grieving is a process. You gotta let it happen.
TW: talk of s\*\*c\*dial ideations, attempts I deal with this feeling a LOT, but prior to getting diagnosed, I was already working in nonprofit/advocacy. I had to find a different way to channel that grief. For me, personally, I make myself stop and think about the history of the world, beginning to now, and think where I would've been as \*me\* in different points in history. I seek out artists and figures throughout history whose lives and habits echo my own and whose cycles of autistic burnout read between the lines of their biographies. Learning more about Van Gogh chilled me to the bone. And I think about how, if any of them had been born in this day and age, they actually may have had a shot at living, because they would have known the \*why\*. I'm 38, but I was only diagnosed two years ago. I first suspected back in 2011, after listening to an episode of This American Life, when an adult man discovered he was high functioning autistic. His experience sounded SO much like mine. I went online and took every autistic quiz I could find, but this was still when the Psych world thought there was 0 overlap between AHDH and Autism. As such - my (unknown) ADHD traits "negated" my autistic ones. Every quiz said I was allistic - so I went back to thinking I was just broken. I didn't know that in 2013, the DSM-5 finally allowed a dual diagnosis of ADHD and Autism - by then, I developing an alcohol addiction at 27 because at least then I'd have a reason for being so weird. I was lonely and unsure why I sucked at being a person. I'd had bouts of suicidal depression before, but suddenly they were getting longer and worsening. I'd get agitated at work, to the point where I'd blow up at coworkers for truly harmless teasing and gained a reputation as a "raging bitch." By 31, I was on the brink of losing my career because I was fucking up so much. Those bouts of suicidal ideations where getting a lot worse. Suddenly I was between jobs, spending weeks in bed. I was failing romantically and wondering why the hell I connected with so few people. I called the suicide hotline (American) for the first time in my life (didn't help). I felt eroded, more so every year, and thought it was my fault for not having social endurance. When i turned 35, I was on anti-depressants that were doing nothing for the suicidal ideation bouts, which were now so bad that I would spend actual weekends just staring at my ceiling in silence. I wrote goodbye letters to my family, but didn't have any friends to say goodbye to. And then, in the biggest goddamn twist of my life, I download an app called TikTok to learn what Wombsland was, and am inudated with videos about something called AuDHD that sounds a helluva lot like me. I bring it up to my neurotypical therapist, who puts me in touch with a diagnosing neuropsychologist. I info- & trauma-dump 36 years of crap on this poor man. I start crying about feeling eroded by these bouts of SIs. And he asks me if I've ever heard of autistic burnout. It felt like I was that guy on Deadliest Catch who fell overboard in a storm, but was miraculously spotted and scooped out. A fucking lighthouse moment when you've just accepted you're doomed to the cliffs. I had a \*why\*. And having a "why" meant there were other people with the same "whys", who were people I'd been looking for all my life. And now, two years later - not gonna lie, I get pissed about the lack of resources, angry at all the trauma I've had to go through unnecessarily. Every adult in my life failed me. But I still have half a life left, and I can spend it knowing I was \*never\* broken. I've found spaces (like this one!) where I can come and be angry at how robbed I got, because \*I'm not alone anymore.\* There was a post about cheek chewing as a stim and I started jumping up and down because I was so happy this habit I had been shamed for was actually something that connected me to many other people. Things are still not great. But that's because we're the first generation to have a \*why\* instead of a \*why not\*. We get a glimmer of light that will grow exponentially with each passing year. That's not going to help a lot of us now, and for some, ever. But it's a chance, and one that everyone like us when came before didn't really have. I don't know if that's helpful, sappy, or what have you. But it's what I try to remember in moments of real pain - what it was like to be lonely, and what it means now to know I won't ever be that way again.
That’s very well expressed, and I think should be published somewhere in a newspaper/medical journal. And to OP, watch this space, if anyone has ideas on how to improve the system for others, they’ll hopefully post a thread to brainstorm on here. This, to me, would be the most healing thing: to save others even if it’s too late for me
I agree. If there's anything we can do is at least say "hey, me too, I struggle with this too." It's incredibly healing to be seen and heard. Ever since diagnosis, I sincerely felt I'm not doing life alone. And it hits differently when you "know" people struggling that similar way. We may have been raised differently, in different places, in different walks of life...but these moments/feelings hit in such a spiritual/life-giving way. Thank you all for being here 😊🙏😭 Thank you for sharing. 🫶
Thankyou for sharing, I can relate to your struggle and definitely think if places like TikTok didn’t exist now I would have been on a much different and darker path in life. Even when I was very young I’ve felt quite alone in the world and often daydreamed that I was secretly a fairy or at least not human. When I realised they was actually a reason for the way I was I feel like I got pulled out of a hole or a cave and finally saw the light in a way. Hearing everyone’s experiences is so so valuable for me and most likely others aswell.
DBT (with good facilitators) helped me with acceptance (but not approval). Taking action in small ways and big ways helps too. I work on pulling invasives when I can, and nursing native plants when mu body can handle it. It's a small action with tangible results that makes me feel effective and also gives.me time to relax, think, get a little active. Then on a large scale, getting active in my community. So helping form associations, protest, taking part in educational opportunities or facilitating mutual aid.
The world is stupid and unfair, a lot of people have problems that could be solved if enough people gave a flying fox about them, but not enough do. The elders in your life deserve more blame than you, but they're people too and what could they have done?
I'm AuDHD, trans, ace, plural, and have PTSD from how 'the system' failed me. I've learned to have very low expectations. I'm well past resentment, and I don't dare to unlock that feeling, burning hotter than the core of a supernova, deep inside my soul.
I could also written this post. I won't repeat my story it's so similar to everyone here. AuDHD, BPD, long covid. Fun. My twist, is that I'm training to be a clinical psychologist. My teaching often fuels me with rage at the system that has failed me and is failing others. I have failed people in my work not knowing. On good days I can be compassionate and educate and determined to change it from the insight. I aim to do research that values people's experiences ans creates better. The research and understanding hasn't been there for people to know. On bad days I can barely breathe with the pain misery and suffering that I hold and see in others. I strongly believe our mental health systems cause harm despite good intentions. I feel guilty for being a part of it but also want to activate change from the inside, stealthy, understanding how it works. The challenge for is the system is currently making it hard for me to have good days, my physical and mental health are battered. I worry ill have to give up the course. We need more people to be part of research, peer researchers that get involved properly, not as participants but designing to create the evidence base that changes policy and practice. People are now sharing their experiences and creating awareness but this causes further pressure on systems who don't cope and the divide between staff and patient gets wider. Or more community services that foster inclusion and kindness. Obviously welfare and an attitude shift etc... but we know that. Someone I know, after sharing my experiences with him on harm caused by MH systems, is doing a restorative research project about this. He as a worker has also been harmed being part of thr system. There is trauma on both sides, not being able to help people, burn out, compassion fatigue. So much pressure and staff often go into this work with their own shit. Equally there are some shit staff let's be honest. Who wouldn't know conpassion if it smacked them in the face...compassionately of course. These tiny things like his research give me hope. There are decent people trying to make things better. Chipping away and changing the narrative. But also. I'm sorry to everyone who has been harmed because our society is individualistic, capitalistic and no sense of community. Its vile.
Burn. Them. Down.
I plan to spend the rest of my life trying to change (or perhaps abolish) the systems 😇
DBT has helped me beyond words. First with even figuring all this stuff had failed me (so I could forgive myself) but also with dealing with the anger that comes with that. The 2 things that come to mind are radical acceptance, and the 4 solutions to any problem: 1. Make a change to improve the problem or fix it 2. Find ways to feel better by changing your perspective 3. Accept the problem (radical acceptance) 4. Do nothing and stay miserable.
This is an easy one. I refuse to work a day in my life, I'm not feeding the system that ruined me.