I actually appreciate the blunt point. So many interviews seem to be framed as if there’s these illusive solutions you are for sure going to find or get to, if… only… you… just… keep… seeking… and trying (insert whatever interview wants focus on).
30 years in and part of the lesson was that sometimes, in some scenarios, no matter how hard you hunt, or how deep you go, how much you spend, or how many hours, if not years or decades, you put in trying to learn about what you can do to navigate… sometimes you just don’t get the answers you hope might exist.
The comment on that part of the interview just really struck me. I appreciate interviews that keep it real. We need more of that in the world today.
That’s so true! We are always looking for something to make everything better, or a way to overcome our challenges.
Audhdpainter was accepting of the idea that increased suicidality risk was a totally unacceptable side effect. End of.
Thank goodness autistic perimenopause is temporary, and that Audhpainter has her spectacular art as her therapy, where hormonal replacement therapy was unable to provide relief 🎨
Peri is no joke, and the AuDHD struggle combined with the peri journey is WILLLLLLLLD. Peri isn’t talked about enough as it is - viewing it through a neurodivergent lens is groundbreaking. This is very essential reading.
P.s. I’m all in for that creative rage group. Sign me up.
Thanks, I am glad you are enjoying the Q&As and please reach out if you would like to participate in the series! I want to share as many stories as possible - mine is a horrendous ongoing peri shitshow but I want to give everyone a platform. Hopefully to balance it all out, and also because there is a whole range of issues that I can't cover just from my own rehashing/trauma dumping.
(If I sound like I have lost the plot, please note that it is bedtime here and my ADHD meds have worn off..!)
And I love the niche of mixing chronic illness experiences with menopause…
“It'd be nice to know ahead of time that each symptom is temporary and that you will come out the other side.”
Menopause is like chronic illness, for some of us, with a notable difference -you come out the other side. Either way, the above statement feels applicable to each of those lived experiences, both separately as well as together.
Right…? It’s why managing it all requires a certain hyperawareness and hypervigilance.
It takes on-going attention to make the distinctions that end up our guiding intuitions of what will help the system flow… either prevent flares, or prevent acute from becoming chronic.
And then perimenopause starts it’s decade of unfolding, throwing a wrench of random new players into what was a long, evolved symphony earned by hard work.
All the fine tuning begins to seep through the fingers like sand, as if we never got out of learning how to coordinate the basic instruments again!
Wow, so well put!! Hadn't thought of it in terms of hyperawareness and hypervigilance, which of course takes more energy, no wonder flare ups of chronic illness, mental illness, ADHD symptoms etc occur!
Yes! I wonder if that’s the same with menopause and mental health? My auti peri is causing psychiatric issues, and I know a total hysterectomy and bilateral oopherectomy will alleviate the symptoms. But will my mental health overall be “cured”? Possibly not, as I can’t stop being autistic, which brings it’s on mental health implications. Will my quality of life be improved? Yes, I believe so. Is that worth the cost to the public healthcare system, and the risk to my overall health? I believe so, but this is the global issue currently. We know we are worth saving, but with so many unknowns to our autistic peri, associated mental health issues and chronic health conditions, it’s an unknown that is not invested in enough to give us answers and, by implication, hope.
Yes, knowing how the battle that all this brings to fight for just the ‘will’ to always fight is a job in and of itself at times, is tough to observe and even tougher to comprehend why it doesn’t change sooner. It’s esp draining to know the experience can leave women so isolated, unseen, and unheard, if not straight up gaslighted or dismissed in the systems.
Having a community where a frame can be given to it is a tiny start, but until the systems take it more seriously, it remains that ever pesky nudging of awareness of the experience that you sometimes can’t carve out a place to be safe & supported in this world. I have noticed how any number of people get the luxury to take their ability/freedom to carve out a space for granted.
I suppose they just can’t always quite comprehend that feeling of not having it until a trauma haults their own life in certain ways for them. That’s when they seek comfort and wisdom of others though… But, to go deeper, it’s likely there where the cracks of light shine through to connect I suppose.
Yes, imagine having a neuro-affirming alternative collective narrative other than “you’re going mad”/“I am losing my mind” before this all takes hold of us individually.
One day, I hope 🤞
Must do my book proposal homework so we can get this message out! 🌎 💪 👏
And yes, at least for me, the lifelong challenge I had finally learned to get under reign with the darkest of lows, suddenly appeared as if it got free to start bucking around, almost with unpredictable free reign at times. While I’m grateful for making it through the earlier years, it was no joy to be humbled by the beginning of the changes.
And, like AudADHDPainter noted, it’d of been nice to be able to know some of it wasn’t going to be the new normal, or to know I could eventually at least count on some of it to go back to being more navigable.
Love this! And - "The inexplicable emotions and sensory things like crawling skin, itchy ears, migraines, eczema (not had since a child) the exacerbated ADHD, brain fog, memory issues, just the massive number of symptoms all thrown in at once!!" - Just seeing someone else list these makes me feel so good. I didn't know the sensation of crawling skin was also a symptom, but makes sense and now I know I'm not the only one experiencing that weird part. Thank you!
It's nuts isn't it! I had a frozen shoulder too and the physio said that's a common perimenopause thing too! The list really is endless!! It's no wonder we all feel a bit bonkers about it!
Crawling skin is so horrible. I get that one too and keep looking down at my arms or feeling my neck for spiders, trying to flick them off - but there’s nothing there!
No but it makes total sense. There are oral health, dental and gum issues associated with perimenopause too. I had a gum graft (which is as traumatising as it sounds) in very early peri due to periodontal disease. Luckily it’s now controlled, but gum is skin, right? 🤔
Also during peri I’ve had rosacea, flaky scalp, usual eczema issues. Definitely flares though. And in the heat I have hives these days, which is all the damn time thanks to Kiwi summer/the climate crisis and an inability to regulate my body temperature, possibly due to tachyphlaxis.
Now that you come to mention it, autistics using HRT often need doses above the maximum licensed dose. This too is a skin issue, since the oestrogen is absorbed (or not, in my case) tramsdermally.
Those of us who are hypermobile/connective tissue “disorder” are more susceptible to skin differences. I’ve always had stretch marks and highly sensitive skin.
🤦♀️ right- the teeth too…. So much in play I forgot that one too! And the chronic dehydration challenges, and my eyes drying out too- all starting to be more persistent an issue once the body started shifting towards the changes. I honestly felt like I was falling apart. I began to question new symptoms with the half-hearted joke that yet another squatter has come to take residence in my already over-crowded real estate!
Skin absolutely changes, I've got eczema having not since childhood and I'm having reactions to things, so streaming eyes etc randomly. It really is the gift that keeps on giving isn't it!!
I began to wonder is there anywhere it is uncommon for women to suffer so much through this phase? I heard places exist, but it feels like a dream or a Disney style lie when you look around at all the chronic health issues (that seemingly, increasingly more women than not) are suffering on-going.
Really? Why haven’t I heard this more often? I’m always looking for spiders and there never are any! Not that I actually want to find them, though. I’m so glad I know what category to put this shitty sensation into now 😆
Thank you for including me in this excellent idea @Sam Galloway (she/her) 💕 xx
“So… That was it.”
I actually appreciate the blunt point. So many interviews seem to be framed as if there’s these illusive solutions you are for sure going to find or get to, if… only… you… just… keep… seeking… and trying (insert whatever interview wants focus on).
30 years in and part of the lesson was that sometimes, in some scenarios, no matter how hard you hunt, or how deep you go, how much you spend, or how many hours, if not years or decades, you put in trying to learn about what you can do to navigate… sometimes you just don’t get the answers you hope might exist.
The comment on that part of the interview just really struck me. I appreciate interviews that keep it real. We need more of that in the world today.
Thank you, I really appreciate this comment 💖
Hi Krystalynn,
That’s so true! We are always looking for something to make everything better, or a way to overcome our challenges.
Audhdpainter was accepting of the idea that increased suicidality risk was a totally unacceptable side effect. End of.
Thank goodness autistic perimenopause is temporary, and that Audhpainter has her spectacular art as her therapy, where hormonal replacement therapy was unable to provide relief 🎨
Peri is no joke, and the AuDHD struggle combined with the peri journey is WILLLLLLLLD. Peri isn’t talked about enough as it is - viewing it through a neurodivergent lens is groundbreaking. This is very essential reading.
P.s. I’m all in for that creative rage group. Sign me up.
The creative rage group would be EPIC!
Thanks, I am glad you are enjoying the Q&As and please reach out if you would like to participate in the series! I want to share as many stories as possible - mine is a horrendous ongoing peri shitshow but I want to give everyone a platform. Hopefully to balance it all out, and also because there is a whole range of issues that I can't cover just from my own rehashing/trauma dumping.
(If I sound like I have lost the plot, please note that it is bedtime here and my ADHD meds have worn off..!)
Yes!!! 💖
And I love the niche of mixing chronic illness experiences with menopause…
“It'd be nice to know ahead of time that each symptom is temporary and that you will come out the other side.”
Menopause is like chronic illness, for some of us, with a notable difference -you come out the other side. Either way, the above statement feels applicable to each of those lived experiences, both separately as well as together.
Yes absolutely, the whole overlap is hard, not knowing which bit is which, and which symptoms will soon be gone!
Right…? It’s why managing it all requires a certain hyperawareness and hypervigilance.
It takes on-going attention to make the distinctions that end up our guiding intuitions of what will help the system flow… either prevent flares, or prevent acute from becoming chronic.
And then perimenopause starts it’s decade of unfolding, throwing a wrench of random new players into what was a long, evolved symphony earned by hard work.
All the fine tuning begins to seep through the fingers like sand, as if we never got out of learning how to coordinate the basic instruments again!
Wow, so well put!! Hadn't thought of it in terms of hyperawareness and hypervigilance, which of course takes more energy, no wonder flare ups of chronic illness, mental illness, ADHD symptoms etc occur!
Yes! I wonder if that’s the same with menopause and mental health? My auti peri is causing psychiatric issues, and I know a total hysterectomy and bilateral oopherectomy will alleviate the symptoms. But will my mental health overall be “cured”? Possibly not, as I can’t stop being autistic, which brings it’s on mental health implications. Will my quality of life be improved? Yes, I believe so. Is that worth the cost to the public healthcare system, and the risk to my overall health? I believe so, but this is the global issue currently. We know we are worth saving, but with so many unknowns to our autistic peri, associated mental health issues and chronic health conditions, it’s an unknown that is not invested in enough to give us answers and, by implication, hope.
Yes I'm sure it is the same with mental health too
Yes, knowing how the battle that all this brings to fight for just the ‘will’ to always fight is a job in and of itself at times, is tough to observe and even tougher to comprehend why it doesn’t change sooner. It’s esp draining to know the experience can leave women so isolated, unseen, and unheard, if not straight up gaslighted or dismissed in the systems.
Having a community where a frame can be given to it is a tiny start, but until the systems take it more seriously, it remains that ever pesky nudging of awareness of the experience that you sometimes can’t carve out a place to be safe & supported in this world. I have noticed how any number of people get the luxury to take their ability/freedom to carve out a space for granted.
I suppose they just can’t always quite comprehend that feeling of not having it until a trauma haults their own life in certain ways for them. That’s when they seek comfort and wisdom of others though… But, to go deeper, it’s likely there where the cracks of light shine through to connect I suppose.
Yes, imagine having a neuro-affirming alternative collective narrative other than “you’re going mad”/“I am losing my mind” before this all takes hold of us individually.
One day, I hope 🤞
Must do my book proposal homework so we can get this message out! 🌎 💪 👏
Yes absolutely! 💖💖💖
Yes…. The time is ripe…
All so true!
And yes, at least for me, the lifelong challenge I had finally learned to get under reign with the darkest of lows, suddenly appeared as if it got free to start bucking around, almost with unpredictable free reign at times. While I’m grateful for making it through the earlier years, it was no joy to be humbled by the beginning of the changes.
And, like AudADHDPainter noted, it’d of been nice to be able to know some of it wasn’t going to be the new normal, or to know I could eventually at least count on some of it to go back to being more navigable.
Yes totally!
Love this! And - "The inexplicable emotions and sensory things like crawling skin, itchy ears, migraines, eczema (not had since a child) the exacerbated ADHD, brain fog, memory issues, just the massive number of symptoms all thrown in at once!!" - Just seeing someone else list these makes me feel so good. I didn't know the sensation of crawling skin was also a symptom, but makes sense and now I know I'm not the only one experiencing that weird part. Thank you!
It's nuts isn't it! I had a frozen shoulder too and the physio said that's a common perimenopause thing too! The list really is endless!! It's no wonder we all feel a bit bonkers about it!
Crawling skin is so horrible. I get that one too and keep looking down at my arms or feeling my neck for spiders, trying to flick them off - but there’s nothing there!
Has anyone considered the skin biome shifting. My skin took a major hit.
The whole system gets wonky, from the link between hormones and blood sugar, etc., I imagine eczema and mold sensitivity can shift or flare.
I also noted the mold groups and the eczema groups both seem to discuss that topic too.
And if you are (or become) food sensitive, then it pays to watch what affects the skin symptoms.
No but it makes total sense. There are oral health, dental and gum issues associated with perimenopause too. I had a gum graft (which is as traumatising as it sounds) in very early peri due to periodontal disease. Luckily it’s now controlled, but gum is skin, right? 🤔
Also during peri I’ve had rosacea, flaky scalp, usual eczema issues. Definitely flares though. And in the heat I have hives these days, which is all the damn time thanks to Kiwi summer/the climate crisis and an inability to regulate my body temperature, possibly due to tachyphlaxis.
Now that you come to mention it, autistics using HRT often need doses above the maximum licensed dose. This too is a skin issue, since the oestrogen is absorbed (or not, in my case) tramsdermally.
Those of us who are hypermobile/connective tissue “disorder” are more susceptible to skin differences. I’ve always had stretch marks and highly sensitive skin.
What a shitshow! 😆 😭
🤦♀️ right- the teeth too…. So much in play I forgot that one too! And the chronic dehydration challenges, and my eyes drying out too- all starting to be more persistent an issue once the body started shifting towards the changes. I honestly felt like I was falling apart. I began to question new symptoms with the half-hearted joke that yet another squatter has come to take residence in my already over-crowded real estate!
Yes, teeth, eyes, everywhere!!!!
Yes! Dry eyes was my first debilitating symptom and is ongoing now years later 😭 (tearless dry eyed crying emoji!)
Skin absolutely changes, I've got eczema having not since childhood and I'm having reactions to things, so streaming eyes etc randomly. It really is the gift that keeps on giving isn't it!!
I began to wonder is there anywhere it is uncommon for women to suffer so much through this phase? I heard places exist, but it feels like a dream or a Disney style lie when you look around at all the chronic health issues (that seemingly, increasingly more women than not) are suffering on-going.
I'd read that it is less of a problem in Japan due to diet, but I don't know how true this is?
Really? Why haven’t I heard this more often? I’m always looking for spiders and there never are any! Not that I actually want to find them, though. I’m so glad I know what category to put this shitty sensation into now 😆
If I find spiders crawling on me here in Aussie (I’m on holiday!), it could be fatal! 😭 😆
So glad to hear you’re on holiday!!!
Thanks, Ang! ☀️ 🥵 🕷️ 🦈 🐍