I relate so deeply to the erasing of self through anticipatory thinking and masking. ♥️
Speaking to practitioners is always so difficult and asking to be seen as a full agentic person, rather than a list of symptoms and “problems to fix” is no small feat. Safer, caring relationships, like those you have found, are so precious.
Being able to see masking as a fluid practice is so new to me. This is such helpful and nuanced framing.
I literally needed to read this right now. It resonated in a way that made so much sense to me.
And then, directly after I read it, I received a message from my real estate agent…and instead of masking I told her what I was dealing with emotionally and why my response was abrupt and reactive.
She was so kind and gentle, and has known I’m autistic from the get go. She has not just accommodated me but met me where I’m at.
Thank you for reminding me that being open and unmasked will help me find the people who will work with me, and not accidentally with a different masked version of me because I can’t trust them.
This past year and a half of uncamouflaging has been hard. But so worth it. And reading your words and your experiences has been so very illuminating.
holy fucking shit. thankyou so much. i think i might be really late undiagnosed autistic. i know there is symptom overlap between autism and psychotic depression and ptsd and adhd and etc but masking, wow. that describes my whole life. like a constant performance of being more "normal", more palatable. almost paralysed at the thought of self-advocacy. so much of the experience you relate i am reading just going pow pow pow in my head. really excited for you being at this next level you describe. bestest luck in your challenges 🍀🐞
I have been reeling from recent medical interactions, my diatribe includes about how I am so very tired of the lack of empathy for me as a person with emotions. I followed your words here completely and am so grateful for this and for these people and you. Thank you ❣️
I relate to this experience so much. I think without being fully aware of it, I've been working on unmasking by advocating for myself over the last few years, and I felt safe doing that because of my relationship with my husband. I'm still working on this and probably will be forever, but having that start is part of how I've been able to heal from burnout and learn so much more about myself.
Sarah... I identified with so much in this I'm not going to be able to express it all, I'm sure...
The complexity of finding people to work with in any sphere who really try to understand and answer my deep questions, the sense of bafflement in response from some...
Wanting to let people see my authentic self (not just smiling and nodding when I'm lost) and how difficult and uncomfortable it is to actually do so, especially out in the world...
Thank you for documenting your process so openly - the struggles as well as the successes and learning, this is what I aspire to 💓
Such a great inside view of those who identify as Neurodivergent. I am HSP and I find that being in a hypervigilant state for most of my life has kept me safe but stuck in illness and people pleasing behavior where I betray myself in order to not disappoint or to maintain "safety". I am only now in my forties understanding the process on a deeper level and allowing myself to have grace and compassion for the parts of myself that conformed for survival.
Every time I digest your thoughts here I wish we lived lives where we would casually run into each other in third places and pretend to make small talk for the first half phrase and then dive in to deep explanations and affirmations for 5 minutes or an hour and inspire each other to think and write some new observation and then continue the conversation or start a fresh one tomorrow.
Thank you for being precisely who you are and consenting to share that with me from day one.
Ugh you're so right about doctors and asking questions. They don't like their expertise questioned, they're understaffed and impatient, they feel like their time's more valuable than ours, that they can disregard access needs, etc... I'm baffled by her decision to call you, tbh.
I've been lucky in that, at least with the paramedical health practioners I see, they're used to people asking questions so they're prepared. My first naturopath's office had information sheets to hand out for everything. I still have them all. When I moved, my second one had a blog and emailed appointment notes after that included links to resources. My osteopath, physio, chiro, acupuncturist are good about these things, too, both in session and over email. Idk, maybe it's because I live somewhere with public healthcare, so paramedical practitioners recognize that the burden of proof and credibility is on them, otherwise they won't get clients. And part of that is making sure that information is accessible. They also work with a lot of people with medical trauma, so it's kind of a requirement. I'm surprised your naturopath doesn't seem to have that same awareness :/
I suppose if you otherwise like your naturopath, you could specifically ask for similar resources in those topics. Guaranteed you're not the only one who would benefit from this. And if she can't/isn't willing to/complains about doing this, that's multiple red flags there to further solidify your decision.
Oh also she could send you a voice note instead of call, or use voice-to-text for herself if she doesn't like email. Just thinking about if there's conflicting access needs. Either way, YOU should be the one whose needs a prioritized.
I really appreciate all this, Jacqueline, especially because I'm noticing that my immediate response is, *oh but that's way too much for me to ask for*...YIKES. Looks like I'm still working through some internalized stuff, including the still-present fear of being "too difficult."
Thanks for the deeply helpful nudge & perspective <3
Having a neurodivergent therapist is amazing (I started therapy with her 7 weeks ago) for many of the reasons you point to with your lovely yet not-quite-getting-it naturopath. I've had therapy with a lot of other different therapists and wasn't able to unmask even after months to a year as much as I've been able to do / be in 7 sessions. Not having to explain how my brain works, being able to use terms like "You know when blah blah happens" and for her to just nod and smile and so clearly understand is just WOW. My god, the proactive masking is exhausting. I am still doing it to some extent with friends and I am wanting to grow out of that but the pre-emptive shame often rears its head (even though they are super understanding and accommodating). Recently, I found out that masking when you have chronic illness (in my case, chronic fatigue) is also a thing, and I'm noticing where I do that too. Thank you for another brilliant and illuminating piece!
It is so good, right?!?!? I wonder if you experience this too: I do a lot of mazing / tend to be a pretty "rhizomatic" thinker, and I also, of course, can go off very easily onto tangents. But my therapist can follow them! And can help lead us back precisely to the original starting point. With NT folks, it just ends up a big forgetful mess, and I can watch people in real time move away from understanding what I'm talking about. It feels so good to normalize that it can be okay for my thoughts to move in this other, busier way.
Thanks for the reading & witnessing & reciprocity, friend! I'm so happy for you.
It was so wonderful to read something that I can relate to 100%ly, thank you.❤️ Having dissociative identity, that whole "to mask or not to mask, and do I even have a choice"-conflict is just the same.
I didn't know about this process called raising the bar - it's great to know that that's exactly what I'm going through in my healing journey right now. Just today I took the risk to finally tell someone how fed up I was with constantly being forgotten by them, after biting my tongue for weeks. I can't imagine a place where that will ever come easily and the process is excruciating, because it's so slow and there's constant falling back into old habits, usually just when you thought you had progressed significantly.
Any way, so great to finally connect on here, hehe. Greetings from Germany.☺️
Laura! Hi hi! So grateful to hear this. & that makes so much emotional sense to me that there are connections between neurodivergent masking & dissociative identity.
Thanks as always for your exploration, Sarah. I know it wasn't your main focus, but the phone call with your naturopath triggered memories for me of disillusioning interactions with healthcare practitioners. Bluntly, I wonder if she may have been feeling defensive because she didn't know what the eff she meant by "chaotic" and "dense," either. In defensive mode, she wasn't able to hear what you needed, to make space for it--she just wanted to get her self-defense over with. It's really hard to be poking out of a shell, fragile but determined, and get hit by a brisk gust of "medical ego." Sometimes I have to remind myself that I'm really good at advocating for others and that it's OK to advocate for myself in the same way, without apology (or even explanation).
This is such a revelatory piece of writing. You've voiced so many things I've been unable to articulate. I will have to reread it slowly, possibly a few times to digest all of this nuanced, in-depth wisdom which I identify with so much in so many ways. In relation to the Craneo Therapy, I can no longer have it. It is too powerful for my system and it takes me a minimum of 2 weeks to recover. I cannot tell you how many times I've Googled " Is it normal to feel utterly exhausted after Craneo". And then speaking to my therapist about it, who is wonderful and completely accommodating, but her answers still not being 'enough' for me to fully understand what's happening in my own body and it therefore not feeling completely 'safe'. And god, everything you say about expecting to be misunderstood and how that affects our daily lived experience. This is all so rich thank you so much Sarah ❤️
Hannah, I was so moved by this comment that I've been carrying it around for the past 3 days trying to figure out how to properly respond. I think for now, I'll just say: Thank you so, so much.
Oh wow, this resonated. I always pathologise my preference for communicating in writing & literally never thought about the fact that I could advocate for that as an access need. This is inspiring. I was at a zine fest this weekend that was very neurodivergent friendly & still recovering honestly, but being in spaces more often where I don’t need to mask (or just not giving a fuck in public sometimes, dancing & stimming & growling at the photocopy place) & it’s made me realize how often it’s been my default. It’s so freeing to sometimes just be a weird human in an animal body. & we also need to be easy on ourselves for how we survive sometimes. Also, I sent you some zines & a note in the mail yesterday & im so excited for you to read them!
I relate so deeply to the erasing of self through anticipatory thinking and masking. ♥️
Speaking to practitioners is always so difficult and asking to be seen as a full agentic person, rather than a list of symptoms and “problems to fix” is no small feat. Safer, caring relationships, like those you have found, are so precious.
Being able to see masking as a fluid practice is so new to me. This is such helpful and nuanced framing.
Thanks for sharing as always!!
I am always so grateful (even if there's grief involved) for the resonances between us, Kendra.
I literally needed to read this right now. It resonated in a way that made so much sense to me.
And then, directly after I read it, I received a message from my real estate agent…and instead of masking I told her what I was dealing with emotionally and why my response was abrupt and reactive.
She was so kind and gentle, and has known I’m autistic from the get go. She has not just accommodated me but met me where I’m at.
Thank you for reminding me that being open and unmasked will help me find the people who will work with me, and not accidentally with a different masked version of me because I can’t trust them.
This past year and a half of uncamouflaging has been hard. But so worth it. And reading your words and your experiences has been so very illuminating.
Thank you. 💖
I am *so* glad she met you there, Wake. And grateful you took the time to read and share this <3
🫶💖🫶
holy fucking shit. thankyou so much. i think i might be really late undiagnosed autistic. i know there is symptom overlap between autism and psychotic depression and ptsd and adhd and etc but masking, wow. that describes my whole life. like a constant performance of being more "normal", more palatable. almost paralysed at the thought of self-advocacy. so much of the experience you relate i am reading just going pow pow pow in my head. really excited for you being at this next level you describe. bestest luck in your challenges 🍀🐞
Sending you SO much warmth as you navigate the incoming pows! And thank you for the kind words <3
I have been reeling from recent medical interactions, my diatribe includes about how I am so very tired of the lack of empathy for me as a person with emotions. I followed your words here completely and am so grateful for this and for these people and you. Thank you ❣️
I hope you're finding some ease and understanding on the other side of all that, Shalagh! So grateful to be in dialogue with you.
I relate to this experience so much. I think without being fully aware of it, I've been working on unmasking by advocating for myself over the last few years, and I felt safe doing that because of my relationship with my husband. I'm still working on this and probably will be forever, but having that start is part of how I've been able to heal from burnout and learn so much more about myself.
I agree--I think it's prob a forever thing. But how great that we have these opportunities to also notice real progress!
Sarah... I identified with so much in this I'm not going to be able to express it all, I'm sure...
The complexity of finding people to work with in any sphere who really try to understand and answer my deep questions, the sense of bafflement in response from some...
Wanting to let people see my authentic self (not just smiling and nodding when I'm lost) and how difficult and uncomfortable it is to actually do so, especially out in the world...
Thank you for documenting your process so openly - the struggles as well as the successes and learning, this is what I aspire to 💓
This really filled my heart <3 Thank you for reading & commenting, Ann.
Such a great inside view of those who identify as Neurodivergent. I am HSP and I find that being in a hypervigilant state for most of my life has kept me safe but stuck in illness and people pleasing behavior where I betray myself in order to not disappoint or to maintain "safety". I am only now in my forties understanding the process on a deeper level and allowing myself to have grace and compassion for the parts of myself that conformed for survival.
Thank you for the witnessing & reciprocity! And really well said.
Every time I digest your thoughts here I wish we lived lives where we would casually run into each other in third places and pretend to make small talk for the first half phrase and then dive in to deep explanations and affirmations for 5 minutes or an hour and inspire each other to think and write some new observation and then continue the conversation or start a fresh one tomorrow.
Thank you for being precisely who you are and consenting to share that with me from day one.
Oh gosh, I wish for this exact same thing, Jeff. Thank you for your long-term friendship <3
Ugh you're so right about doctors and asking questions. They don't like their expertise questioned, they're understaffed and impatient, they feel like their time's more valuable than ours, that they can disregard access needs, etc... I'm baffled by her decision to call you, tbh.
I've been lucky in that, at least with the paramedical health practioners I see, they're used to people asking questions so they're prepared. My first naturopath's office had information sheets to hand out for everything. I still have them all. When I moved, my second one had a blog and emailed appointment notes after that included links to resources. My osteopath, physio, chiro, acupuncturist are good about these things, too, both in session and over email. Idk, maybe it's because I live somewhere with public healthcare, so paramedical practitioners recognize that the burden of proof and credibility is on them, otherwise they won't get clients. And part of that is making sure that information is accessible. They also work with a lot of people with medical trauma, so it's kind of a requirement. I'm surprised your naturopath doesn't seem to have that same awareness :/
I suppose if you otherwise like your naturopath, you could specifically ask for similar resources in those topics. Guaranteed you're not the only one who would benefit from this. And if she can't/isn't willing to/complains about doing this, that's multiple red flags there to further solidify your decision.
Oh also she could send you a voice note instead of call, or use voice-to-text for herself if she doesn't like email. Just thinking about if there's conflicting access needs. Either way, YOU should be the one whose needs a prioritized.
I really appreciate all this, Jacqueline, especially because I'm noticing that my immediate response is, *oh but that's way too much for me to ask for*...YIKES. Looks like I'm still working through some internalized stuff, including the still-present fear of being "too difficult."
Thanks for the deeply helpful nudge & perspective <3
I completely understand the bit about anticipating the worst. I expect to be misunderstood, questioned, disagreed with, wrong...
Not sure I'm ready to open myself up and experience whatever happens. That scares me, because I believe so strongly. Baby steps.
Baby steps! And trust your own pacing--there's been a long slow runway that got me to this place where I can take the steps I'm taking now.
Having a neurodivergent therapist is amazing (I started therapy with her 7 weeks ago) for many of the reasons you point to with your lovely yet not-quite-getting-it naturopath. I've had therapy with a lot of other different therapists and wasn't able to unmask even after months to a year as much as I've been able to do / be in 7 sessions. Not having to explain how my brain works, being able to use terms like "You know when blah blah happens" and for her to just nod and smile and so clearly understand is just WOW. My god, the proactive masking is exhausting. I am still doing it to some extent with friends and I am wanting to grow out of that but the pre-emptive shame often rears its head (even though they are super understanding and accommodating). Recently, I found out that masking when you have chronic illness (in my case, chronic fatigue) is also a thing, and I'm noticing where I do that too. Thank you for another brilliant and illuminating piece!
It is so good, right?!?!? I wonder if you experience this too: I do a lot of mazing / tend to be a pretty "rhizomatic" thinker, and I also, of course, can go off very easily onto tangents. But my therapist can follow them! And can help lead us back precisely to the original starting point. With NT folks, it just ends up a big forgetful mess, and I can watch people in real time move away from understanding what I'm talking about. It feels so good to normalize that it can be okay for my thoughts to move in this other, busier way.
Thanks for the reading & witnessing & reciprocity, friend! I'm so happy for you.
Definitely! So helpful.
It was so wonderful to read something that I can relate to 100%ly, thank you.❤️ Having dissociative identity, that whole "to mask or not to mask, and do I even have a choice"-conflict is just the same.
I didn't know about this process called raising the bar - it's great to know that that's exactly what I'm going through in my healing journey right now. Just today I took the risk to finally tell someone how fed up I was with constantly being forgotten by them, after biting my tongue for weeks. I can't imagine a place where that will ever come easily and the process is excruciating, because it's so slow and there's constant falling back into old habits, usually just when you thought you had progressed significantly.
Any way, so great to finally connect on here, hehe. Greetings from Germany.☺️
-Laura
Laura! Hi hi! So grateful to hear this. & that makes so much emotional sense to me that there are connections between neurodivergent masking & dissociative identity.
Also, go you for speaking up!
Thanks as always for your exploration, Sarah. I know it wasn't your main focus, but the phone call with your naturopath triggered memories for me of disillusioning interactions with healthcare practitioners. Bluntly, I wonder if she may have been feeling defensive because she didn't know what the eff she meant by "chaotic" and "dense," either. In defensive mode, she wasn't able to hear what you needed, to make space for it--she just wanted to get her self-defense over with. It's really hard to be poking out of a shell, fragile but determined, and get hit by a brisk gust of "medical ego." Sometimes I have to remind myself that I'm really good at advocating for others and that it's OK to advocate for myself in the same way, without apology (or even explanation).
I'm so grateful for this reminder, Jody. (Plus the reminder that none of us are alone when it comes to struggling with healthcare!)
This is such a revelatory piece of writing. You've voiced so many things I've been unable to articulate. I will have to reread it slowly, possibly a few times to digest all of this nuanced, in-depth wisdom which I identify with so much in so many ways. In relation to the Craneo Therapy, I can no longer have it. It is too powerful for my system and it takes me a minimum of 2 weeks to recover. I cannot tell you how many times I've Googled " Is it normal to feel utterly exhausted after Craneo". And then speaking to my therapist about it, who is wonderful and completely accommodating, but her answers still not being 'enough' for me to fully understand what's happening in my own body and it therefore not feeling completely 'safe'. And god, everything you say about expecting to be misunderstood and how that affects our daily lived experience. This is all so rich thank you so much Sarah ❤️
Hannah, I was so moved by this comment that I've been carrying it around for the past 3 days trying to figure out how to properly respond. I think for now, I'll just say: Thank you so, so much.
💕
“I’m covering my entire body with masking tape, sealing myself up in anticipation of any amount of hardship.” Makes it hard to be flexible for sure.
100!
Oh wow, this resonated. I always pathologise my preference for communicating in writing & literally never thought about the fact that I could advocate for that as an access need. This is inspiring. I was at a zine fest this weekend that was very neurodivergent friendly & still recovering honestly, but being in spaces more often where I don’t need to mask (or just not giving a fuck in public sometimes, dancing & stimming & growling at the photocopy place) & it’s made me realize how often it’s been my default. It’s so freeing to sometimes just be a weird human in an animal body. & we also need to be easy on ourselves for how we survive sometimes. Also, I sent you some zines & a note in the mail yesterday & im so excited for you to read them!
I am so pumped!!! Thanks for the inspiration, friend.