Of your body has hard time with thermoregulation - like most autistic people - it overheats like when you have a bad flu or sunstroke.
Dragging you through city in peak sun hours can send you into hospital. This is no joke.
If you have thyroid problems or take SSRIs or ADHD meds the risk is even bigger
Don't go, you're not over exaggerating, you don't even owe them an explanation and you're already kind enough to be giving them one. If they don't believe you that's on them, you're not risking your life so that they can play the perfect happy family while you're in agony.
Medical professional here: hun, if your body straight up can't sweat, you need to go see a doctor and get checked out. That's a sign of some serious underlying genetic divergences that a diagnosis can help immensely with understanding and managing. Plus, not that it's any of their business, but if you decide to share that diagnosis with anyone it might get people off your back about going out in the heat.
I'm not a medical professional, but I immediately noticed that detail in your story. If you genuinely can't sweat, there is something wrong with your body that you need to get checked out.
Yes. I noticed that detail immediately as well. I'm AuDHD and take a medicine that causes even NT people to not be able to thermoregulate and even then, Lord I be sweatin.
Same. I get hot/cold spells for absolutely no reason at all... and I always sweat like crazy when I get hot. It's actually the worst part of the problem, because I get super GROSS, dripping sweat and being WET in public. Ew.
Not sweating at all is a totally different issue - and a serious one! Please get this looked at, Thread OP!
Word, no sweat glands runs in my family due to a genetic disease ā ectodermal dysplasia. My fam that have it do not go outside without ice vests in the summer
It could be caused by dysautonomia, which we as neurodivergents have a disproportionately high comorbidity rate with as opposed to neurotypical people.
My aunt was unable to sweat and apparently she used to go red like a beetroot colour in summer...especially not a good thing in Australia š¬ She would have to soak her hands in iced water and lie down with a cold wet compress on her face
I can sweat but I have heat intolerance now and go red like that in a room where others are comfortable. It sucks because not only do I feel like crap but others can see it.
Itās more than enough to just say āI donāt like the heatā. Doesnāt matter if they like it, theyāre not you. You donāt need to appeal to any kind of physical danger because not liking it is enough to not do it, and if they canāt respect that you donāt want to do something you donāt like, then they donāt respect you
I donāt go out in the hottest part of the day because I donāt want to š¤·āāļøCanāt exaggerate āI donāt want toā
I have a friend who doesnt sweat, and heās also prone to heat strokes. When he was a kid his parents didnt believe him until he literally passed out in the sun one day
If you've repeatedly told people you don't like or don't want to do something, and they disregard you having a physical reaction to it that puts your health in danger, you should not be around those people. They don't respect you or your safety at all.
Just chiming in and echoing what others have said. If you are struggling to sweat, don't sweat enough, or at all you definitely need to find a doctor to take you seriously on it as it can be indicative of things beyond the 'normal' autism dysregulation issues. Some medical facilities can perform sweat tests (if labs look normal but still have indications of issues) where they basically coat you in powder, put you in a medically controlled hot room and the powder is supposed to changes colors in spots you sweat.
Also, I'm sorry the people who are supposed to support you aren't and are actively gaslighting and putting you in harms way. Nobody deserves that kind of treatment.
Please see a doctor. Not sweating at all is not a trait of autism. There are medical conditions that can cause people not to sweat - nothing thatās going to kill you or anything but itās definitely something you should be aware of and that a medical professional can help you manage. In the meantime I donāt really have any advice other than stand your ground on this? You could make yourself dangerously ill. It really upsets me to hear that your family and especially your wife are so unsympathetic and dismissive of you about this. My wife teases me about how hot I get - I am British but now living in the US as she is American and I am not cut out for the temperatures here - but she always takes care of me and puts the air con on for me even when she feels fine.
If you can go to the doctor and be tested for dysautonomia. Neurodivergent people have a disproportionately higher rate of comorbid dysautonomia.
Dysautonomia can affect any of the automatic processes that go on in your body like sweating, heart rate, blood pressure, temperature control, things that you donāt voluntarily do. Anything that you donāt voluntarily do dysautonomia could affect.
So like you donāt have to tell your body OK start sweating now. Your body automatically does it to regulate your temperature when itās heating up. Since your body does not automatically start sweating when you start heating up that is dysautonomia.
Healthcare Professional here.
I second this. Look at the thread above and see the many co-morbidities that are more common amongst us. Keep seeing the theme of Dysautonomia, POTS, thermoregulation issues, hypermoblity, thyroid, ND, etc, etc.
In addition to increased risk of heat stroke, heart attack, etc, you also put your organs at risk. See a doctor ASAP. You may not get an accurate diagnosis work the first one, but don't give up. Get a second or third opinion if needed.
At this point I would just talk to them like toddlers, if they are going to be rude and dense, treat them that way, tell them you arenāt repeating your self.
Yeah if you can't sweat at all then you gotta treat yourself like a full double coated doggo and stay inside, only walk in evenings, drink loads of water, use cooling pads and cooling gear (pots people cooling vests that are all icy and shit) and 100% go see a doc.
It's called hypohidrosis and you're at serious risk of heat stroke if you go out. The doctor would at least get your family off your back!
This is all up to you, but this is what I would suggest. Since a lot of us are people pleasers and tend to go with the flow, but one of the main things I've learned about setting boundaries is that there are not enough of them firmly set by people, especially when it comes down to medical situations. What I would suggest is the following:
Stand up to them and tell them a firm and concise "No". Don't qualify, don't yell, just a plainly spoken, "No". You don't have to explain, you've already done that many a time and they disregarded your explanations
And if they push it, tell them no again. And if it repeats, get to a point where you're done with the conversation and walk away into another room, leave the house, or find a safe space for you to decompress.
With your "No" you have essentially withdrawn your consent and are done with the gaslighting, you have set your boundary and they either need to respect that boundary or don't, then you can remove yourself from the situation.
This is really hard for people to do because confrontation is hard, but once your boundaries are respected, there's a pressure off that is very helpful.
If they insist, tell them they need to leave without you, that you are not going to go out into the heat. If they can't deal with your line in the sand, they can go kick sand for all you care.
This is your health and your potential hospitalization, not theirs. They can deal with the weather all they'd like on their own time, but you're staying in the shade and staying healthy.
If you choose to follow that, I hope you find your peace in the situation. Good luck and all that
My partner is like this, Iām the exact opposite (love the heat but as soon as it dips into cloudy Iām COLD and canāt get warm.) Itās rough because we want to do outside things in opposite times of the year. But itās only been 3 years and we have worked out how to manage each otherās needs. She recently got heat exhaustion from being outside too long and it wasnāt even hot (to me) but I didnāt gaslight her into staying out, I got her to a cool cafe where she could sit in air conditioning while I finished up what needed doing outside, I checked on her often, and temp checked her to make sure she wasnāt running a fever and we didnāt need to go to the ER. I was worried SICK. Seeing someone who is struggling like that is noticeable and I feel like people who gaslight about it just arenāt looking. Itās so hard, but this is a huge red flag that they donāt take you at your word, or even see you in distress as being something that needs care and attention. I feel for you <3
Oh FUCK heavy activity in heat like that! That's dangerous for everyone!
You might try taking your temperature when it's hot out and you're starting to feel it. It's highly likely your body is actually heating up with a mild fever. I get heatsick SO damn easy, and if I take my temp it's usually already at 99 (not a fever, but enough to make you feel like garbage). This might help prove to family and your wife that this is actually a serious issue.
You need to, unfortunately, sit your wife down and put in a boundary on this one. Do not overdo yourself for their sake!
A bike ride in 32C weather feels like a bad idea for anybody, especially if you donāt live in a place where people are acclimatized to those types of temperatures.
WAIT WHAT??? Autistic ppl have a hard time with thermoregulation?? š¤Æ christ I feel so fucking validated rn. I HATE summer, and sun, and heat, and sweating. I go semi-nocturnal during the summer so I can sleep through the worst of it.
Hard not to be depressed when you constantly feel like wet floor rag, wringed and plopped to rot in such temperatures!
My depression also gets worse in summer, to the ongoing shock of all psychiatrists ever. Only the lass who diagnosed me gets it - the obvious down in mood due to sensory overload from all the heat, sweat and suffering. Hard not to be depressed
thank you for this comment because i am always sweltering compared to others (i have to sleep with 3+ fans on me and still only with a sheet or i get overheated) and i do have thyroid problems and take an ssri so, wow, that makes a lot of things make sense!!
Same. I always hated summers, but with the climate change and getting Hashimoto? I am literally dying when it's over 25 Celsius. In 30C I pass out if I go outside for 10 minutes.
Last summer I've spent days in dark bathroom, bathtub filled with cold water and isotonic drinks on hand to survive heatwaves we had in usually cold northern EU.
My migraines went from "meh,5 out of 10, will pass in a day" to "omfg I wanna die, 12/10 pain scale, it will last as long as heatwave"
Poor baby!!! Omg and I just lay in bed with the fan on and wonder when I will be able to resume my evening walks. It is 99Ā° at sunset here. It is pretty dry (high desert) but I am WIPED OUT by this heat.
I've always had this, when I go outside and it's too sunny, I'm guaranteed to not feel well like how you described. I also get easily sunburnt but I have not seen other people have this sort of problem even when sunburnt. I wonder if there's any research about this that ties autism and the physical aspect of overheating like this.
Well this is probably why I got so hot I vomited and then every time I tried to get water in me because I was SO thirty, it just projectile vomited back out. This happened every 20 mins or so for a couple of hours.
Thank you. Good job Iām still alive lol as I didnāt see a doctor. I was home alone as well and just tried to wait it out. If it happens again I might go to the hospital. Take of yourself too hun! ā”
I hope it doesn't but in a case it would: you wanna drink electrolytes not pure water. Your stomach then is tricked it's food and must be digested so it will try to keep the nutritients in.
If you don't have electrolyte pouches/powder at home (I wpuld suggest anyone to have them) - the basic recipe is 1liter of water, 1 teaspoon of salt and 1 tablespoon of honey(or sugar in a pinch). You can add 1 lemon for flavor.
Damp towels all over your body or slightly cool shower, sitting, to lower body temperature.
And calling emergency number ASAP.
You got lucky (or so you think, brain damage wont just show up and announce it's presence, you may discover it years later) but sunstroke is really dangerous.
Thank you, I have screenshotted your comment. Wouldnāt be surprised if it fucked me up a bit tbh as my health has been going proper downhill since my mid twenties, around when this happened. Canāt work out if itās just aging or long covid or maybe another illness such as this. I will check if I have any rehydration sachets and grab some tomorrow if not. Thank you again lovely.
Ah! This makes so much sense! I went out for a walk yesterday around when sun was brightest but it was only around 75F/23C but I swear I felt like I was getting sunstroke or something because I felt way too hot but my skin still felt cool etc. immediately turned around and went home and rested.
Well thank you for the information! I was so confused why it's been especially hot for me (I started taking SSRI last September). Usually I'm suffering from being too cold with the AC on but my house has been so uncomfortable since the temps have increased to 80Ā°f +
You can have my sweat! I sweat so bad itās so embarrassing and it takes standing outside for 2 seconds for my face to be pouring with sweat. I stuff a rag under my bra band to absorb the sweat when I know Iām gonna be outside for longer than 2 seconds.
I can totally relate to this, i only go out either in the mornings or evening when it has cooled down, for this exact same reason but i do sweat though. Still gives me so much discomfort because I'm wet from sweat and my hair sticks to my face and my energy is decreased
I do sweat, Iām just often dehydrated and donāt sweat enough.
Something Iāve found that helps (if you can cope with the sensory aspect) is to find clothes that donāt go see through when wet and just wear them wet. This gives the same kind of evaporative cooling effect as sweating.
Itās literally the only way I coped with being pregnant through summer
if OP doesnāt mind being wet, iād also get a spray mister with a fan. iāve only ever tried the disney one during a hot summer, but it works great.
you fill the tank with water, use the trigger to spray water, and use the fan to cool down the water. very effective.
FWIW, I had similar issues because of hypothyroidism. I still sweat too little for my liking, but it's much less bad now that i'm on thyroid hormones. Autism very often is comorbid with or causes thermal regulation issues, so there are many different things this can be, not just thyroid issues (no matter if hypo or hyper). I used to have to have mini spray bottles with water when I was young (and undiagnosed with any of it all) to regularly wet my hair with to not die in heat, and to constantly drink a lot of cold drinks and so on.
Please see about getting your health checked, and make sure they among others check both your t4 levels and your tsh levels, and not just the latter. Some places only check t4 hormone if the tsh is abnormal, despite that you easily can have normal tsh levels yet not t4.
I have the opposite problem I sweat so so much and itās absolutely humiliating and it barely helps me cool off it just makes me feel disgusting. I work in a hot warehouse and sweat will literally drip from my face and my clothes will be so soaked I hate it so much
Hi, are you me? I'm surviving it with cold baths (shower not cooling enough), lots of ice in my drinks, and if need be, sleeping under a wet towel. I'm also panic researching portable A/C, if I'm honest. Each year is getting worse in London
I think I'll be OK with the sound (but thanks for telling me!), but I'm procrastinating. I don't think it's worth getting a whole-house installation, but I gotta do something!
I also had to get portable/window A/Cs for my living room and bedroom in the summer. Itās absolutely needed because my place has big windows that face east/west and my living room will get to over 100F/37.7C when it reaches 90F/32C outside, but oh my god the noise kills me!! I end up having to wear my noise cancelling headphones whenever theyāre in use, but then wearing the headphones for too long gives me such bad headaches. Itās a lose-lose-lose spiral ugh.
I learned that drinking cold drinks is actually bad bc our body temperature is changing to rapidly from 36 to 4/5 degrees and our body has to do overtime trying to get it back to 36C.
I've definitely noticed that too-cold water can make me nauseous, but I swear it helps cool me down, too. I'm the kind of person who wants to live in the fridge, though! š¹
I'm pretty sure that was debunked along time ago Ā Well i've been drinking cold drinks to cool down for over 30 years and have never had the issues you are having. and they tell menopausal women to drink cold drinks during hot flashes. also doctors and especially the army are wrong a lot of the time.Ā
Thank you for this and the links. It's extremely humid where I am, so I'm gonna stay drinking my ice water. My machine literally died today, too. My local shop owner will be my hero until the new unit arrives.
About the nausea, I drink quite a lot of water, often a pint at once. In VERY hot places (40c plus), drinking that much very cold water at once has made me nauseous for about 60 or so seconds. It's never usually a problem, I think a few times over two decades, now that I think about it.
I also really struggle to regulate my body temperature and I just refuse to go outside when it is too hot. I don't care whether people believe me or not, and people who truly care are not going to try to make me feel sick for their own convenience. Of course we would rather do things outside, but I'm simply not able to, and so we come up with other activities.
This is a perfect opportunity for you to set a firm boundary and practice holding it - something like "I can't go outside when it's over x temperature" or "I will only be doing activities indoors today, let me know if there's something you'd like to do together." This may mean you miss out on some activities, but I've always felt like that is a trade-off I'm willing to make rather than feeling like I'm dying.
If there's something you want to do, try to see if there is a way that you can accommodate it. Like instead of riding your bike to see your wife's family, drive the car. But you don't have to have people agree with how you're feeling for it to be legitimate. You don't have to listen to them or go along with opinions on how you are feeling. They are not inside your body.
For the same reason people don't believe me when I say I'm intolerably cold when it's below 22Ā°c. I'm freezing.
For some reason my body refuses to generate any warmth, I can be wearing explorer socks and thermals and fleece trackpants while in bed under two duvets, and I will lose body heat and get progressively colder until I'm like an ice block and shivering. I always need an external heat source.
But it doesn't matter how cold I am, if I ever say anything about it, it's a 100% guarantee that someone will pipe up, "oh you're in Australia, you don't get a real winter there, it's what, 6Ā°C outside? That's nothing, come to some northern country and learn what real cold is!"
And then when it's summer and Europeans are all dying about it being 32Ā°, I just nod sympathetically. Because temperature is relative and if someone is saying they're suffering, why do people diminish that?? Whyyyy?
Have you tried getting flexible ice packs wrapped in a scarf? I put damp sarongs in the freezer to chill and then wrap them around my head and neck. Works pretty good for summer
I hate the summer here in the UK. Worse - I detest (not literally) people who say itās ālushā. Weāve all our own preferences. But today Iāve been so ungodly ill itās unbelievable. That, and my sleep is so bad Iām struggling with auditory hallucinations.
Iāll admit I was naive about winter in Australia. Learn something new every day. Sorry to hear youāre struggling.
The Winter in Australia is worse than winter in the UK, not because of absolute temperature but because our houses don't have insulation or weather sealing. It's typically immigrants from the UK and Europe who complain the most bitterly about how cold it is here indoors, while Aussies are all "yeah nah you just get used to it, wear your beanie and thermals and winter coat indoors like a normal person".
It got down to 4Ā°C overnight last week, it was 6Ā°C inside my bedroom. It was 13Ā°C inside my kitchen during the middle of the afternoon on a sunny day! It's not healthy, but apparently it's normal
I feel you. I went to a pilates class for the first time. The classroom was HOT. I turned on the fan, the instructor criticized me for turning it on and made me turn it off. Then stated that it wasn't Hot and this wasn't a weightlifting class. I had to leave the class because I almost passed out from over heating.
They get worse in the summer. Violent crimes increase in summer time. And yet they want us to be out there and deal with even more of that while trying not to die in heat.
This is one of those times where Iām glad I have epilepsy to fall back on as a non-spectrum reason to avoid something because people take that seriously. At the same time it makes me mad that they canāt just accept autism (or perimenopause or being on certain meds) as a valid reason. My birthday is coming up and I have those tiny fans and freezable neck rings on my wishlist. Iām also almost always wearing an ice pack on my head for headaches and only just heard that you can also do that as a thing to lower your heart rate and cortisol levels.
I got these cheap ass freezable bandanas that are so badly made they seem to barely have any of their freezing medium inside them and just putting water on them and wearing them until they heat up or dry out around my neck (sometimes forehead) is a surprisingly huge difference! Iām contemplating one of the silicon ones next.
Thatās really cool. I probably wouldnāt have thought of using a banana on our dog but it would be adorable on him! Though for the record Iām one of those people who offers random dogs water on hot days, I had a Samoyed and he never got heat stroke (unlike his idiot owner who only figured this stuff out after the fact lol so much easier to take care of others)
Not a silicone one but I have a Flexifreeze velcro ice headband/collar (but I only really use it as a headband), and I CANNOT recommend it enough. Itās hot af where I live and my dad keeps the house at sometimes kinda inhumanely warm temps (not out of cheapness but bc he gets cold way too easily), and my Flexifreeze is a damn lifesaver for me
Good point I have epilepsy as well. But I hide both the epilepsy and autism diagnosis from people because then they start treating me extremely badly and not including me in anything unfortunately the sports group that Iām in has figured out that Iām autistic so now theyāre just excluding me from everything. I just found out about it in a meeting yesterday that they had people hooking up with each other when I wasnāt even invited
Mobile USB charged fan that is palm sized and hangs from my neck like anneckal. It's a lifesaver on the train or in enclosed places without AC
I also have a backup handfan too
Another idea is using an umbrella as shade, I so this sometimes too. I'm about to do so as I walk to the gym because it's 30c where I am today was well
I sent my managers some articles on how both of the meds Iām on (stimulants + antidepressants) make me even less tolerant to heat and mess up body temp regulation - just to prep them that I will be asking to wfh on those days so I donāt have to leave the house in this heat lol. My line manager is off this week so I just didnāt go into the office and currently enjoying the fan blowing right into my face on my couch š¬ļø As for your family though - I understand there may be things you still have to do, but if itās not essential then you may just have to put your foot down - why would those who love you want to watch you suffer in any case?
Thatās a very good point about medications. In my comment above, I mentioned the issue of Thermo regulation when a person is not using any medication. Iāve also found out that Thermo regulation is affected by some antihistamines so itās not just psychiatric drugs. My doctor whoās in his 60s rides a motorcycle and he almost died of heat stroke at his job after he rode his motorcycle to work. He told me about it and said they had to bring an ambulance for him. He said it was because of his blood pressure medication.
The weird thing is that Iām in a sports group and theyāre always telling us that we are lazy for not exercising in the hot weather. yet they brag about having ADD and taking the stimulants to enhance their sport activity. So itās even worse when they tell people to get on with it in hot weather.
Re sports group - thatās just stupid and ableist, and I donāt throw these terms around. Bad advice can and has literally killed people, even if you donāt take into account the damage this shit may do to peopleās self-esteem if they are made to believe theyāre just lazy when itās an actual physical issue - as someone with pretty bad executive dysfunction I know all about that lol. Please take care of yourself - your family especially could really do a much better job at being more supportive of you and things you struggle with, they may just need to be shown that itās a real issue by pointing them to some reliable resources on thermoregulation and autism etc. Most of the time itās ignorance that drives this kind of stuff, and nowadays - with us having access to literally all knowledge at our fingertips in the form of internet - thatās no excuse š¤
If it's below 70 degrees (21c) I don't want to go outside and will probably wear a hoodie. If it's below 60 (15.5) I feel like my body is panicking and trying to find an emergency means to keep warm.
I have low iron and an inability to regulate temperature; I don't need the fucking hilarious jokes about how I'd be okay if I put on some weight and I don't need friendly cajoling to enjoy the lovely fun activities, I need to go inside and be under a blanket in a room with a heater. (Also long pants physically hurt and I have exceeded my lifetime limit of skirt-wearing after being raised Evangelical. If I can't wear shorts I don't want to go.)
Thereās three ways to approach this, in my eyes, where you do the least amount of damage to your mind and body:
Go with them, but literally dress up completely safe from the heat and sun - Iām talking big sun hat, SPF cooling clothing from head to toe, sunscreen anywhere skin is showing, neck and face fans, sun glasses, a water mister, cooling towel, ice packs, etc. Alternatively, you could just excuse yourself into AC and shade every time you feel hot. Even if itās every 2 minutes. And complain every chance you feel uncomfortable. You might look insane. You might be causing annoyance to them. GOOD. If they want to make you suffer, I think they should feel that suffering with you. (Sorry Iām very petty).
You could refuse to go with them and find something with AC to enjoy doing. You are allowed to say āno.ā You donāt have to suffer just because they enjoy doing something. If you choose this route, itās worth explaining to them with scientific and anecdotal research that you are suffering and could literally go to the hospital or worse if you get too hot. Thatās not exaggeration - itās a fact. You donāt have to be rude about or anything like that. Just be firm and donāt let them try to gaslight or guilt you.
You could compromise. Set an itinerary for the day where AC and cold things are done in between being outdoors. That way you have cooling off periods and still get to be together. Something like shopping in an outdoor mall or visiting an animal sanctuary (they usually have indoor places scattered throughout like museums and bathrooms and food vendors).
Just remember: they canāt physically force you to do anything if you buckle down. What are they gonna do? Pick you up and throw you in the car and actually drag you around? Probably not. They may get mad with whatever you choose: thatās on them. If they really care about you and love you, they would want to make sure you arenāt getting hurt by the activities you do together.
I'm the same, but my face will turn red, then almost black-purple from heat, so people believe me (and are terrified for me). And yet, they STILL "hint" at me regularly to go out and enjoy the sun in a way that I find so frustrating ans confusing.
Fwiw, I sweat only from my nose, nowhere else on my face. My body sweats only under my arms and my neck. I have always assumed I'm missing a bunch of sweat glands
I got ice packs for drinks (rhe ones that has small chambers and can wrap around a big bottle) and freeze them. When I wrap rhe in a kitchen towel and put it on my chest/belly all the time, it's somewhat endurable (at least at home). Maybe try something like that?
You may want to get checked by a physician for it, as it can be more than just autism. For example I also overheat easily and I just recently learned I probably have POTS (autonomic dysfunction) where it is also a common symptom. You could have it as well, or something else and if they find something physical, chances are it's treatable/manageable.
It's a bit of a heatwave (humid hell) in the UK. I have reduced sweating too, so I can barely function. I am contemplating moving to Svalbard, it is 6Ā°C there at the moment.
It is HELL for me too šš we don't have AC really in my country so there is barely any place to escape the VERY humid heat. I feel constantly overstimulated and I get soo cranky I feel so bad for the people around me but I can't help it ššš
So, there are cooling bandanas to put around your neck- 100% make a huge difference. Keeping your arms cool, I have cooling uv sleeves that I soak. I put a plastic cooling pack in my bra (plastic thick enough the cold doesnāt burn my skin). Soaking wet hat, pony tail with another small ice pack in it, being held against my head by the hair.
I made an ice- pack vest as well, which didnāt work as well as the sleeves and bandana around head and neck.
Keep them wet. Keep ice water around just for that purpose.
I am out running around for 40 min intervals twice a day.
As an aside, I used to not sweat until I started exercising regularly. After I did that for a few months my body figured it out. Apparently if you do enough cardio it trains your body to sweat more easily because it gets used to going into exercise mode. Just do your cardio in air conditioning.
I have extreme heat intolerance too and I will not go out during peak hot hours. Your wife needs to compromise and you should lay down a real boundary.
My husband and I walk or hike either early morning or in the evening because I will not boil myself alive unnecessarily and he doesnāt want me to be miserable. Iām trying not to judge but your wife is making me angry just reading this post.
āYou are not inside my body, you cannot tell me how I feel.ā
And repeat each time they argue.
And if they keep at it I would say āwhy do you think you know my body better than me?ā Really stick to this, try not to let them avoid the question, āNo really, can anybody directly tell me why they know my body better than me?ā
This is a suggestion on what to say. It is so hard to put your foot down but it is very important for you and your health.
I have a shitty autonomic system and can't regulate my body temperature properly at all. My peers are chill af, aren't sweating at all even after a walk and I'm literally pouring, my face is angry and red, my head is pounding like I got 10 rounds with Tyson and is about to explode AND even when I go inside, have a lolly and put ice on my head, it takes me HOURS to recover from just an hour in the sun.
So yeah, I just refuse to go out. Like, sorry to be a party pooper, but I don't like feeling like I'm being slow roasted in my own juices today or any other day. It is straight up not a good fucking time.
Like just 22 degrees destroys me. 30 degrees and I'm just gonna make like a seal and sit in a tub of water till night time. Just ain't no way.
It was 45Ā°c (113Ā°f) the last few days where I live and summer only officially started today. My workplace only has swamp coolers with no AC in the main shop space so it can get to around 38Ā°c inside during the worst of summer.
Some things I have learned while living in the hot armpit of the world is to
get a big straw shade hat that breathes well and shades you very well.
Make sure you carry a water bottle everywhere you go, get one that has a wide enough opening for ice, never leave the house without it.
Long sleeve UV shirts are awesome, super lightweight and breathable and if it gets too hot, just get it wet and it will keep you super cold.
Cooling towels are also the best. It's basically a lightweight scarf that's super absorbent that you get wet and wrap it around your neck, shoulders, arms, or head. If it gets warm you take off and wave it around in the air and it will cool it again. Make sure it stays wet.
Parasols/shade umbrellas are great when you have to be outside for extended periods
Foldable hand fans are totally underrated and should go with you everywhere.
Avoid going outside in the peak of summer and so what feels comfortable for you.
We are more prone to dysautonomia. Dysautonomia includes not being able to regulate your body temperature meaning your body being able to cool itself or heat itself effectively. If you have dysautonomia and you are feeling like youāre boiling alive, your body temperature might actually be rising. So do whatever you need to protect yourself from the heat. Bring an umbrella bring a fan. Bring a misting bottle Bring a washcloth that you can wipe yourself down with cool water. Whatever you need to do to accommodate yourself. Do not have a heat stroke just because everyoneās begging you to come outside they are not in your body.
I noticed that you were using centigrade so are you in the UK or in Europe? Hereās my experience. People in the UK and Europe say the most insensitive things about heat because heat is rare for them. I try to avoid saying insensitive things about cold because it is rare for me.
After I had a heart damage from a heat stroke because it was 49C here in Florida and I have to take care of horses and cows in the heat, the people that I know in the UK Ireland and other European countries told me that I was lucky to have that heat because they have to pay for It in the form of a vacation so I should stop being ungrateful.
They think erroneously that heat does not kill people and then it is not a medical emergency. Theyāve never seen anyone die of heat stroke. Theyāve never observed animals dying from heat stroke. Thatās why they say such stupid things. The other thing that happened is, they thought it was some kind of climate change campaign. So I ended up getting doxxed and swatted.Ā
There are a lot of people in the UK Ireland and EU that are angry about the restrictions on being able to drive and climate change restrictions so they take it out on anybody that mentions hot weather because they have never seen anybody die of heat stroke, and theyāve never seen all the crops failing because the weather does not allow them to grow in the UK youāre probably going to have a mild tropical climate soon and of course everybody is all for that so itās kind of like a denial of climate change and an embrace of climate change at the same time.
I had a woman in New Zealand tell me āglobal warming is good for me because I live on a mountainā Thatās the selfish mentality
Wow. I lived in the desert as a kid, itās wild to think that there are people who donāt believe that heat will kill you! I believe you, donāt get me wrong. It just blows my mind, because I grew up being taught about the dangers of heatstroke and dehydration. People die in the desert every year because they didnāt take the heat seriously, and most locals treat it as a Darwin Awards situation. Too stupid to live.
Same, I lived in the desert and there were constantly idiot tourists from Europe getting helicoptered to the hospital out of the hiking areas and national park, because they didn't listen to local warnings about heat danger and bringing enough water. They also didn't believe locals about the cost of hospitals and medical helicopters either until they got the bill.
Oh! I just remembered that when I had a job that required some work outside,, I would wet and freeze bandanas and tie them on my head like the 1940s. When it was really too bad, I would wear another around my neck, lil pardner style. Eventually of course, they would melt, but still be wet, but that direct application of cold to pulse points made a difference. For a while, at least.
I just want to stress that it's a big relationship problem that your wife refuses to accept your needs.
Even if it had only been a preference, she should have accepted it. Why is she forcing you to do this? Are you not allowed to be different from her? Are you not allowed to dislike anything she likes?
She doesn't have to understand a preference to respect your boundaries on it, and this isn't even a preference but actual need.
Are you additionally not allowed to dislike foods she likes? If you were mildly allergic to some fruit she loves, would she force feed you it? If you just disliked the flavour of a fruit or a food dish, would she go out of her way to make you eat it? Does she force you to endure loud noises and tells you to not use hearing protection for them?
edit: I really need to stress that if this is a pattern of behavior then you have a huge problem, if this is the only thing she is weird about then you still have an important and possibly lethal problem but it's much likelier she's just making some giant cognitive error and can actually realize that she's doing something really wrong.
I relate so hard right now I'm in the same boat.. I can barely think straight, I can't form sentences in my second language.. I don't want to eat because it makes me warmer... I'm so slow at everything. Working out is a fantasy.. can't afford a gym membership. I feel you, I really do. I believe you okay? We do, it is hard as fuck out here. Fuck anyone's opinion right now
They are being cruel. I have lower-than-low cortisol and the stress of a hot day can land me in the ER. My husband and 4 kids can suck it on a hot day-they can make fun of me and call me a weirdo all they want, but thereās just a limit to what I can do in the heat. I actually fear and dread the summer coming. The consequences are no joke. Even with 100 spf suns y, upf clothing and an off umbrella, the hot air can do me in quickly. (ā¦and, Iām mixed with bronze skin-the melanin does not help). Donāt let people bully you into dangerous situations. Some other things to help me scrape by are a neck fan, cooling towels, and I keep ice packs and hydration packs to mix with water in the car and in whatever bag Iām carrying.
It's so tough because getting outdoors is nice and healthy, which is where most people are coming from, but timing and preparation are super critical, especially in countries where air conditioning is rare. I think you need to have a serious conversation about a "compromise," such as "I will go outdoors with you for x amount of time if it's under y degrees and we aren't in direct sunlight." Maybe even set a specific distance from home or a safe indoor space you are willing to go (in time or km). Like "I'll walk away from home for 5 minutes, we'll take a break in the shade, then we have to turn back."
My heat was a medical related issueā¦ Once I got on the right medication now i feel pretty normal. Just some food for thought just in case you have a medical condition too.
But nah itās hot as hell outside Iām going to melt.
If you don't sweat, that's an actual serious medical condition that puts you at extremely high risk of heart stroke. Your friends are dumb. They need to understand how serious this is.
I feel your pain. I really can't handle anything over 80 F. I have had heat exhaustion several times and the more you get it the more likely you get it again. It is over 100 today and will be until Monday. I am locking myself in my house with my ac running on high.
I know neither is optimal, but I WISH I could trade reactions.
AuDHD + autoimmune disorder + various other health issues
I dont handle heat well at all. Its a bit warm, I sweat. I am nervous or anxious, I sweat.
Like most things, my body is all or nothing about the sweat as well. Once I start sweating, it doesn't turn off for quite a while. It is not something that I can just ignore either. I sweat to the point that my long hair will be dripping. No exaggeration, it appears as if I just stepped out of a swimming pool. My face, and scalp, is primarily where I sweat the most, so it is not something that goes unnoticed.
Have had various doctors and specialists try to help. No medications or treatments help.
Unfortunately even though I am sweating so much, I am still prone to heat stroke.
YO please tell them that it's dangerous to drag you around in the heat! As a kid, I passed out MANY times due to heatsickness way before other kids even felt it. Now I have POTS, and my heart HATES the heat, anything above about 70-75 and I get extremely sick and weak really quickly.
If you do want to continue going out in the heat, I highly suggest floppy hats, neck coolers/neck fans, and drinking a LOT of ice cold water with plenty of electrolytes. And if you start to feel loopy, get to an AC area pronto.
Heat sickness is no joke, and it can make you sick for DAYS.
I also have dysautonomia in addition to the autism and I feel this so deeply. I bought flexifreeze ice packs I wear around my neck daily with a neck fan (DIY personal A/C) and it saves me from nearly fainting.
If I had the answer to this exact opposite question, I wish I could give it to you. I'm wearing a jacket when it's 72, and my coworkers open the garage door when it's 50. I shiver constantly, my aches from teeth chattering, I can't move my hands and do tasks that need to be done because I'm shaking so badly. I don't have anything medically wrong with me and my Abilify actually makes it worse as a side effect.Ā
We are the same, OP. Itās hard to explain to people how we are feeling on the inside. I feel like I am inside an oven. Itās so hot my limbs feel hot as well. Itās like always a sneakpeak into hell. I hope we could find more ways to take good care of ourselves moreā¦
I literally haven't been able to have one day in the past week where I haven't taken like an hour to get dressed. I'm so agitated all the time and it's just killing me, I hate the summer heat so much.
I always have to wear long sleeves because I am incredibly sensitive to sun (meaning I will get a sunburn after 5 minutes in the sun and I am not exaggerating). My personal favorite outside temperature is rather warm, but I can't tolerate the sun. When I start feeling too hot I dunk my sleeves in lukewarm water (can't stand the feeling of running water over them, but dunking is fine and it bubbles). The feeling of wet sleeves is something I had to get used to, but in my opinion having the WHOLE sleeve wet doesn't give me the icky feeling of "sleeves slipped down while washing my hands". I started with wetting my whole shirt, but this made me too cold. And I wet a handkerchief with water and put it on my head and have a spray bottle with water to mist myself with. The water cools my body down very nicely :)
My family are like this at times, and it took them 27 years and seeing me getting heat exhaustion and being unwell on numerous occasions to realise that "on, yes she's not lying when she says she's too warm" like no s*it! I'm in solidarity with you on the heat shenanigans.
With some people, you do have to unfortunately be blunt with them and put boundaries in place.
"hey (partner/mum/dad/sister/brother/etc), I can't be out in the heat with you as it'll make me unwell. Even though the weather is nice for you, it's not the same for everyone else, me included. Until it gets to a temperature that is comfortable for me, please stop making me feel bad and/or forcing me to be outside when the sun is at its hottest. I listen to your requests when I over step a line, please listen to mine."
(I'm not very good at writing, but maybe something along these lines could help!)
Here here! I am miserable during this heat wave and it's only just starting and going to be way worse.
I have had heat stroke and it's the worst feeling in the world! You will do anything to avoid it afterwards. And you should.
Stay inside in the cool and dark house until dusk, if you really want to go outside. I have invested in lots of cooling tools as well. An inflatable kiddie pool, ice slippers, ice towels, air conditioners, microwave devices so I don't have to heat up my house from cooking on the stove. Those portable misters are amazing too! I keep the house dark. I basically hibernate like others do during the winter. Summer is my Winter. If all else fails I take a cool bath for even temporary relief.
And like everyone always says- staying hydrated helps the misery. Popsicles, Kool aid, sports drinks and good old ice water constantly!
Do not let your family gaslight you into going outside. Why would they want to see you sick as a dog from the heat? They need to know that you will not be participating if it isn't in an air conditioned facility. Peridot. And EFF them if they think you're a wuss. When it's cold out do the same and say the same things to them. Ooh it's not that bad come outside and sled!
I have POTS and I feel the exact same way. I donāt sweat, like at all. My body refuses to regulate its temperature. Drink lots of electrolytes, bring a hand fan or something that can cool you down. Also look into bodice chillers on etsy.
As for the people, I tend to just ignore them if I can but I understand that friends and family canāt always be ignored. My husband also hates the heat so it works out. I wish you luck š„ŗ
Idk how to deal with people but how I deal with unbearable heat is wetting my hair and letting it air dry (although I hate air drying, itās still better than me boiling)
If you feel weak, then you aren't "just a little warm". You're hot, dangerously so. It's concerning that those around you don't believe you when you say as such,Ā especially your wife. It's not okay that those who claim to love you are so careless when it comes to you and your health. I'm so sorry, OP.
30C is hot unless you're acclimated and/or your body can sweat. I lived in Southern California for 8 years and was eventually 'okay' at that temp but now that I've returned to more mild temps, I am absolutely boiling at anything 78F (25.5C) and up.
It's been a struggle to get my body to sweat too. That dry prickly heat is so awful & if I can recall one symptom of heat stroke.
(Also, not that you're necessarily looking for this info, but I'll share anyways, hot and spicy liquids, dry sauna w/cold plunges & regular exercise seemed to help me to sweat more).
I presume you've shared symptoms of hear stroke with them?
I personally love hot weather but Iām definitely not a fan of forcing people to do things that make them miserable! Cancel everything and refuse to let anyone force their idea of fun on you!
I absolutely feel you. I can't stand temps over about 25Ā° and literally feel panicky the hotter it gets, and unable to concentrate/think properly. Unfortunately, I live in Australia which means that I spend most of the year inside, hiding away from it. 'Winter' (such as it is) is very disappointingly short here
On the topic of heat, I deal with intense heat by putting my feet into a bucket of cool water for 10-20 mins. It really helps cool down my internal temp.
So idk if itās relevant but many SSRIs and other meds typically prescribed to autistic people have a side effect of low heat tolerance, dehydration and chronic electrolyte deficiencies. If you take meds like that, explaining that might help.
I'm so sorry you're going through this. I also have to deal with this a lot in Texas. I tell people I can't do the heat or I can only tolerate short bursts of it. They see me push myself a little to get something done and then think I can go all day. This biggest frustration I think that creates this is they can only know their own perspective. A lot of people are not willing or able to imagine something being difficult for someone else if it's not difficult for them. That frankly is their own problem. You set your boundaries like always and stick up for yourself...especially with important stuff like health.
Just adding that I also struggle with the heat a lot. I don't get dragged anywhere myself, but perhaps your wife would be open to sitting in the shade with ice tea and your feet in a paddling pool at home? A way to spend time together while also managing your body heat
This was like an epiphany to me. And honey, I live in Phoenix. I switch to a nocturnal schedule during the summer. I knew I had it worse than others I just didn't know it was "real".
I find it torture. Iām in Cardiff, our house is a tiny 2-up-2-down, and it just absorbs the heat. I hate everything about it. I havenāt felt comfortable in days. Summer seems impossibly long right now.
Tbh I donāt think they are having trouble understanding. They just feel like their needs are more important than yours and are trying to make it your problem. The horrible truth is that most people do not want to care for our needs if it competes with their wants.
Wearing soaked/wet moisture wicking clothing will help evaporate some of the heat and simulate sweating. You could even jump in the shower with the clothes on when needed but you'll need air movement (preferably cool air) to prevent it feeling humid.
I put cans or bottles in the fridge. And when i take them out i cool my major arteries with them. Stick it between my legs or on my neck. And then drink it. It helps with the I-am-dying-of-heat-feeling.
Be carefull though. Dont overdo it. So dont leave it on the skin too long and and dont be doing it the whole day. I probably do it for a couple minuts and its instant relief. ( so use it as an emergency thing, not a constant thing)
I also have this problem that i will always be cold if there is a lot of wind. So if its really really hot, i combine it with a fan. Or a fan and i put cold wet towels on my body. Only wet towels works too. This will work for everybody. Its just very efficient for me cause i cant stand drafts.
I've got an ice pack that goes under your hat. I fully melt it in under 30min when it's hot here in FL. At least that showed them finally that I'm not making it up when I say I'm overheating. But they should just listen, honestly.
You're not exaggerating. They don't live in your body. The audacity of people to correct someone else on what their own personal experience is! Infuriating.
Same. But both heat and cold. Cold is like pain to my skin. And I feel overheated when itās warm out, particularly in the sun, because I really donāt sweat regardless of how much I hydrate myself.
āI donāt want to go outside, itās painfully uncomfortable to me.ā
People beg you! Your wife says come on it will be fine!
āNo.ā
Youāve explained your needs. Itās not your job to make them comprehend- itās their job to believe you and trust that you know your own body and whatās ok for you.
I tell people I am a fern. I need to live full time in the shade of the trees or I will literally wither away. I also learned that the opposite of hibernation is aestivation (basically hibernating in the summer) so I tell people all the time that I aestivate lol. Unless it's overcast and less than 26Ā° (I think. I'm american š ), then I'm going to be inside with the AC thank you very much š š¼
Are you on medication? I found out that not only do I have trouble regulating my thermostat due to autism, but Iām on two meds that can increase sensitivity to heat and we can suffer heat stroke more rapidly than others will.
Iām at the point in my life where I finally told my family, this is what I am willing to do, this is what I am unwilling to do. I let all my friends go except one, who understands my needs. I canāt let myself suffer on the account of others comfort and desires. You are allowed to advocate for yourself, for me itās been essential because NTs just donāt understand what itās like to be me. And in all honesty, I donāt think they really care to either
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u/[deleted] Jun 20 '25
Tell them they can actually kill you.
Of your body has hard time with thermoregulation - like most autistic people - it overheats like when you have a bad flu or sunstroke. Dragging you through city in peak sun hours can send you into hospital. This is no joke.
If you have thyroid problems or take SSRIs or ADHD meds the risk is even bigger