Ableism is why. Capitalism is why. A 'pull yourself up by your bootstraps' mentality is why. We can and must do better, and it starts with a commitment to stop debating a person's worth.
I just want to say thank you. I am a person with an intellectual disability. I will never understand why some people don’t think people with disabilities don’t deserve to be treated like normal humans. I know many other people who have intellectual disabilities and they are the happiest people you will ever meet. At the end of the day people who have disabilities all want the same things love, respect, inclusion, belonging and so much more.
You’re so welcome! And thank you for taking the time to read and engage, I really appreciate it.
I’m grateful you’re sharing your experiences so that more people can understand what our lives are like and that we have just as much value as anyone else.
It’s so well developed from such an early age. I retired early because of my disability. Still felt “less than” because I can’t care for my yard anymore without asking for help. Logically I can tell myself “all the things” about how much I am worth, but there is this nagging voice from within chiding me for not being able to care for myself.
I've been calling it Passive Eugenics. But it's feeling less and less passive lately.
I was raised by people like this and that made it so much harder when my body finished breaking. They never let me or taught me to take care of myself. They pushed constantly, demanding more and more and punished whenever I tried to step back to breathe. So when my body broke, it was that much more panic inducing to face what is grown up with at home now from the whole of society. It still screws with my head.
I've lost friends and had to fend off those who felt their superior health gave them the authority to lecture me on how to correct my own. Nevermind that they knew nothing about any of my actual health issues.
I'm still trying to figure out how to believe I have worth given that my family made sure I knew I didn't right from the beginning and society has done everything they can to reaffirm it.
I’m so sorry Katie. I hope you know you’re not alone, and most of us struggle with feeling worthless at times. Internalized ableism, especially when combined with abuse from people who should have cared for you, can be really hard to deal with.
I hope you know that just by sharing this and being open and vulnerable, you’ve helped other people. I can guarantee it.
So many of us feel alone and like we don’t have worth, and when we see others admitting their struggles and trying to work through them, it can provide solace.
I lived in a similar family. When I finally pushed so hard that I broke permanently, two of them suddenly decided that I'm lazy, swinging the lead, not trying to get better...
Adjusting to not being able to work was very, very hard as s result. After years of continuous subtle remarks and implications that I was being weak, didn't want to get better, etc., I had to cut them off.
Great article. In the US, part of the taxes I paid when I was working went into disability insurance. I am entitled to be paid disability payments now, at least that's how I view it. I paid into insurance, so they have to pay me back. Its a percent of my earnings, which unfortunately were not high because I spent some of my wage earning years as a stay at home mother. I get less than 1,000. Trump and RFK Jr can go fuck themselves. I live with my elderly mother and take care of her. I have more value than those useless fucks. I am a caregiver as limited as I am. Your value isn't determined by money, but by how you support your community by being the light that you are. You are a writer and have the ability to touch and encourage so many people with your words, your thoughts, and your experiences. How dare that man think you have nothing to offer except grinding away at the money machine. How bereft he must be if that's all he values. How empty. I pity him.
“It’s almost never privileged white people. Especially these days. Those who have the most in society are actively targeting the vulnerable, and they’re doing it by debating our ‘worth’ in public.”
I’m debating with myself about my worth now that so many things have changed in the Long Covid landscape. It’s ironic that while I’ve been away grieving a deceased family member — and actually ready to work in a gentler capacity, the silence makes me wonder did I ever have “it?” Was I ever useful? Do I even matter? The privileged will use you and discard you for the very reason they thought you were special in the first place.
Thank you for sharing Chimere, and I’m so sorry for what you’re dealing with.
You have value just as you are, and I hope you can pursue the work you were hoping to do in a gentler capacity.
It can be really hard to come back to advocacy, work or anything after grieving the loss of a loved one… I hope you can be gentle with yourself and that people show you the kindness you both need and deserve.
Thank you for your writing which even were you unable to do anything else makes you a person of worth. I live in the UK where getting any disability benefits, which of course like you I paid into a system designed to cover those benefits, means jumping through many hoops just to get enough to barely live on. Despite that the government are in the process of making even more of those hoops for less support. And the lack of insight is breathtaking, one of the areas that they are looking at is the sudden increase in young people on disability benefits. This is being done with no mention of the fact that many people, including young, are suffering from long covid which still is not fully understood and for which there are no adequate treatments. I should point out that I am neither young nor suffering with long covid but the evidence that it exists is easy to see yet government think the answer is to make it harder for young people to claim benefits. As an x archaeologist I know that in past societies there is evidence that disabled people were cared for, looked after. It’s only with capitalism where this idea of monetary worth came about. Everyone has worth that transcends this false monetary worth, like you I feel that capitalism is coming to an end, my hope is that whatever replaces it sees the worth in everyone and not just in those who create monetary worth
Such an excellent point about past societies. It was always understood that you took care of the elderly and infirm, and we’ve done away with that for what? So we can enrich billionaires and corporations who don’t care about us?
I’ve heard there’s a lot of proposed changes to the UK program, and it’s wild to me that all these countries are seeing huge increases in disability and yet none think to actually address the rampant spread of Covid.
We’re in a mass disabling event and we’re punishing the sick instead of dealing with what’s making them sick. It’s so frustrating.
Well done! 👏 What would the world do without your mind and thoughtful contribution? Disability doesn’t mean you no longer are a productive member of society. Look at all you’ve written and given to society!!!
I wrote an entire chapter on this is “Sage Words FREEDOM Book One.” On worth, on wealth, on what it means to live in the world today in poverty and expected to not deserve leisure like anyone else. I live near Disneyland in California. There is a motel here filled with homeless kids who will never get to go to disneyland but they live close enough to hear the laughter of other children enjoying it. The parents work- one is a nurse for heart patients- she still can’t afford a home let alone the privilege of leisure or taking her kids to Disneyland. When we find ways to enjoy life we are judged as not deserving. This woman saves lives all day- she deserves leisure. We all do. Being disabled doesn’t mean we don’t work- we just don’t often get paid as much as others for the work we do- for if we do- we lose our benefits and our health care costs more than our pay could cover. We are forced into poverty.
I have a friend- not as bad as yours- who doesn’t believe that I deserve to eat out. Who thinks food in stores is still cheaper in this economy- than a $5 happy hour appetizer meal or $3 taco Tuesday. He will never understand until he’s in my position and he will never be in my position because he, like your friend, had many privileges, a good income, a strong savings, retirement investments and a wife that does all the cooking. If I could have done what he did, I would have.
My wish for your ex-friend is that he be imbued with empathy, aka, karma.
Thank you for sharing Sage, that’s heartbreaking about the kids so close to Disneyland. I hope you find joy in their days and that the nurse gets the recognition she deserves.
As you said, we still work, it’s just not always in the traditional sense. Unpaid caregivers are another example. Society doesn’t recognize them the way they should despite them doing incredible and important work.
We all contribute in our way, and that way looks different for everyone and that’s what makes us special!
Also, I saw you wrote me a note asking for a quote… but I lost it and can’t seem to find it to reply. I’m so sorry! I’m having some glitchy issues with notes. Can you remind me here or via DM?
"Soft" eugenics. I like it. It has a pleasant sound reminiscent of diet Coke, light beer, and mild cigarettes. But for eugenics since that's what we do in 2025 of course. I'll have to give it a try sometime...
That’s exactly how absurd it is. Just like those things you mentioned, they’re basically trying to brand eugenics into something palatable to the masses. They’re trying to make it seem healthy and “ok” when it’s anything but.
It’s social murder, and that will never be “soft”.
Were you able to get the DTC at least? If so you will hopefully get the new CDB as long as you don’t live in Alberta.
It’s really punitive though. They don’t want us to be able to get ahead. They give the absolute bare minimum and make people jump through tremendous hoops just to get that.
Yes I got the dtc as my doctor approved it and I got a great tax refund last 2 years because of it ! 2000 k when I should have broke even ! This extra will help at least it’s not considered income so it’s tax free ! I live in Ontario
I'm so sad by how things have gone in Alberta. I lived in Calgary for two years and explored the whole province, I always wanted to go back. Can't see that happening now.
Thank you for addressing this much-needed topic, as it is very timely and personal for me. In the US things are even worse, as many are only eligible for SSI, the maximum federal monthly payment is $947, and savings are capped at $2000. To get even this small amount can take years, years in which one has to show no income coming in, and years in which one has to continually prove one's activities of daily living are too comprised to do any theoretical job whether practical or not. This has led to many being homeless or living in their cars. My disability story begins with a vaccine injury at the age of four which resulted in a coma, then pesticide poisoning at the age of 10 which left me bedridden for years, and finally a stroke after a massive herbicide exposure three years ago which culminated in severe EHS after an adverse reaction to two successive brain MRIs. I have never been able to work and have been labeled disabled by three different doctors. However, I have not been able to get Social Security disability because SS requires medical records every three months and my parents could not afford the exorbitant costs of environmental medicine doctors, those who specialize in MCS and EHS and who do not accept insurance, to provide the necessary documentation. My parents also did not see the point when the disability payments are even smaller for dependent children and adults, and in an unspoken agreement provided for me throughout their lives, while I was expected to help them throughout theirs. This arrangement was far from ideal, as I was psychologically abused and taken advantage of; nonetheless, I endured until their recent deaths - my mother last year, and my father in March. (I never left to date or marry, as I did not have the health to do so.) My parents died without wills and without making any sort of provisions for me. I am now without an income and facing homelessness. The family home I have lived in for decades is set to be divided amongst myself, my sister, and two half-siblings who I have not seen in decades. My siblings have openly stated that they will not help me in any way and will not allow me to stay in the home unless I buy out their portions at approximately $100,000 which they know I do not have. Because of my sensitivities and finances, I have nowhere else to go. I still cannot get disability due to the lack of medical records, and I certainly do not have the money at this time to pay environmental physicians' hourly fees ranging from $600 - 1500. I have not even been able to find a decent therapist that will accept my Medicaid insurance to deal with my losses and this overwhelming stress. Since my dad's death, I have not been able to somehow magically find work outside the home due to my severe environmental sensitivities, nor have I miraculously found a way to deal with my EHS and extreme fatigue to be able to work remotely. Out of desperation, I started a GoFundMe but due to a lack of a social circle or social media presence after fees it netted about $2100. In order to obtain even that amount of money, I had to become a virtual beggar and publicly humiliate myself by putting my health and loss story on display and then deal with ignorant and ableist daily FB harassment from strangers and casual acquaintances, as well as harassing phone calls, and even a handwritten note from one person saying among other things that "she could not help me retire forever." I do not have the health to endure homelessness, and the stress of this situation has worsened my health conditions, and after the stroke, I was released from the hospital with the warning to avoid stress or I could have a more intense stroke that could result in death or complete incapacitation. In the end, it is quite sobering to realize that there is not an adequate equally accessible safety net for the ill and disabled, and it is equally sobering, if not more so, to realize one's own family members and few "friends" are fine with eugenics, as they have all left me to die including my parents. Speaking of eugenics, I can't help but think of the Canadian news story from 2022 in which a lady from MCS applied for MAID because she could not find accessible safe housing. Her life was saved with a GFM that netted $65,000, while others with MCS in the same year were not so lucky and went through with MAID. I simply do not understand a world in which the lives of the disabled are not valued, and where your ability to make money, inherit money, or have a supportive spouse or other family members determines not only if you will live or die, but if you live, the quality of your life, as being ill is not cheap.
I'm so sorry to hear all of this Janine, and I remember the person you're speaking of with MCS. I suspect she was able to have such a successful GoFundMe because the media picked up her story.
How many people will we never hear about? Far too many.
So many are in need of help and often it's those with the least who are willing to provide any kind of financial support. The disability community really does try and show up for one another, but most of us are all struggling because we've been forced into legislative poverty.
I sincerely hope that you are able to find somewhere safe to live. My MCAS is really bad and environment plays a huge role, I have a lot of triggers in my apartment that I know are making things worse but it's nearly impossible to find a safe place to move.
I just want to say thank you. I am a person with an intellectual disability. I will never understand why some people don’t think people with disabilities don’t deserve to be treated like normal humans. I know many other people who have intellectual disabilities and they are the happiest people you will ever meet. At the end of the day people who have disabilities all want the same things love, respect, inclusion, belonging and so much more.
You’re so welcome! And thank you for taking the time to read and engage, I really appreciate it.
I’m grateful you’re sharing your experiences so that more people can understand what our lives are like and that we have just as much value as anyone else.
It’s so well developed from such an early age. I retired early because of my disability. Still felt “less than” because I can’t care for my yard anymore without asking for help. Logically I can tell myself “all the things” about how much I am worth, but there is this nagging voice from within chiding me for not being able to care for myself.
The internalized ableism is really hard to deal with.
I write about it on a regular basis and I still struggle with the intrusive thoughts of worthlessness. You’re not alone!
I've been calling it Passive Eugenics. But it's feeling less and less passive lately.
I was raised by people like this and that made it so much harder when my body finished breaking. They never let me or taught me to take care of myself. They pushed constantly, demanding more and more and punished whenever I tried to step back to breathe. So when my body broke, it was that much more panic inducing to face what is grown up with at home now from the whole of society. It still screws with my head.
I've lost friends and had to fend off those who felt their superior health gave them the authority to lecture me on how to correct my own. Nevermind that they knew nothing about any of my actual health issues.
I'm still trying to figure out how to believe I have worth given that my family made sure I knew I didn't right from the beginning and society has done everything they can to reaffirm it.
I’m so sorry Katie. I hope you know you’re not alone, and most of us struggle with feeling worthless at times. Internalized ableism, especially when combined with abuse from people who should have cared for you, can be really hard to deal with.
I hope you know that just by sharing this and being open and vulnerable, you’ve helped other people. I can guarantee it.
So many of us feel alone and like we don’t have worth, and when we see others admitting their struggles and trying to work through them, it can provide solace.
Your worth is just being you.
I lived in a similar family. When I finally pushed so hard that I broke permanently, two of them suddenly decided that I'm lazy, swinging the lead, not trying to get better...
Adjusting to not being able to work was very, very hard as s result. After years of continuous subtle remarks and implications that I was being weak, didn't want to get better, etc., I had to cut them off.
Great article. In the US, part of the taxes I paid when I was working went into disability insurance. I am entitled to be paid disability payments now, at least that's how I view it. I paid into insurance, so they have to pay me back. Its a percent of my earnings, which unfortunately were not high because I spent some of my wage earning years as a stay at home mother. I get less than 1,000. Trump and RFK Jr can go fuck themselves. I live with my elderly mother and take care of her. I have more value than those useless fucks. I am a caregiver as limited as I am. Your value isn't determined by money, but by how you support your community by being the light that you are. You are a writer and have the ability to touch and encourage so many people with your words, your thoughts, and your experiences. How dare that man think you have nothing to offer except grinding away at the money machine. How bereft he must be if that's all he values. How empty. I pity him.
Thank you Sharon. I really appreciate this.
You bring up an excellent point about caregivers too. They’re often unpaid and yet doing such difficult and incredibly important work.
We must get away from this idea that value is tied to capitalist contribution. It’s simply not true.
We all have a light to shine and each of us is unique and should be valued as such.
“It’s almost never privileged white people. Especially these days. Those who have the most in society are actively targeting the vulnerable, and they’re doing it by debating our ‘worth’ in public.”
I’m debating with myself about my worth now that so many things have changed in the Long Covid landscape. It’s ironic that while I’ve been away grieving a deceased family member — and actually ready to work in a gentler capacity, the silence makes me wonder did I ever have “it?” Was I ever useful? Do I even matter? The privileged will use you and discard you for the very reason they thought you were special in the first place.
Excellent writing.
I didn’t lose my SSDI when I got married though: thank God.
Thank you for sharing Chimere, and I’m so sorry for what you’re dealing with.
You have value just as you are, and I hope you can pursue the work you were hoping to do in a gentler capacity.
It can be really hard to come back to advocacy, work or anything after grieving the loss of a loved one… I hope you can be gentle with yourself and that people show you the kindness you both need and deserve.
Thank you for your writing which even were you unable to do anything else makes you a person of worth. I live in the UK where getting any disability benefits, which of course like you I paid into a system designed to cover those benefits, means jumping through many hoops just to get enough to barely live on. Despite that the government are in the process of making even more of those hoops for less support. And the lack of insight is breathtaking, one of the areas that they are looking at is the sudden increase in young people on disability benefits. This is being done with no mention of the fact that many people, including young, are suffering from long covid which still is not fully understood and for which there are no adequate treatments. I should point out that I am neither young nor suffering with long covid but the evidence that it exists is easy to see yet government think the answer is to make it harder for young people to claim benefits. As an x archaeologist I know that in past societies there is evidence that disabled people were cared for, looked after. It’s only with capitalism where this idea of monetary worth came about. Everyone has worth that transcends this false monetary worth, like you I feel that capitalism is coming to an end, my hope is that whatever replaces it sees the worth in everyone and not just in those who create monetary worth
Such an excellent point about past societies. It was always understood that you took care of the elderly and infirm, and we’ve done away with that for what? So we can enrich billionaires and corporations who don’t care about us?
I’ve heard there’s a lot of proposed changes to the UK program, and it’s wild to me that all these countries are seeing huge increases in disability and yet none think to actually address the rampant spread of Covid.
We’re in a mass disabling event and we’re punishing the sick instead of dealing with what’s making them sick. It’s so frustrating.
Well done! 👏 What would the world do without your mind and thoughtful contribution? Disability doesn’t mean you no longer are a productive member of society. Look at all you’ve written and given to society!!!
I wrote an entire chapter on this is “Sage Words FREEDOM Book One.” On worth, on wealth, on what it means to live in the world today in poverty and expected to not deserve leisure like anyone else. I live near Disneyland in California. There is a motel here filled with homeless kids who will never get to go to disneyland but they live close enough to hear the laughter of other children enjoying it. The parents work- one is a nurse for heart patients- she still can’t afford a home let alone the privilege of leisure or taking her kids to Disneyland. When we find ways to enjoy life we are judged as not deserving. This woman saves lives all day- she deserves leisure. We all do. Being disabled doesn’t mean we don’t work- we just don’t often get paid as much as others for the work we do- for if we do- we lose our benefits and our health care costs more than our pay could cover. We are forced into poverty.
I have a friend- not as bad as yours- who doesn’t believe that I deserve to eat out. Who thinks food in stores is still cheaper in this economy- than a $5 happy hour appetizer meal or $3 taco Tuesday. He will never understand until he’s in my position and he will never be in my position because he, like your friend, had many privileges, a good income, a strong savings, retirement investments and a wife that does all the cooking. If I could have done what he did, I would have.
My wish for your ex-friend is that he be imbued with empathy, aka, karma.
Thank you for sharing Sage, that’s heartbreaking about the kids so close to Disneyland. I hope you find joy in their days and that the nurse gets the recognition she deserves.
As you said, we still work, it’s just not always in the traditional sense. Unpaid caregivers are another example. Society doesn’t recognize them the way they should despite them doing incredible and important work.
We all contribute in our way, and that way looks different for everyone and that’s what makes us special!
Also, I saw you wrote me a note asking for a quote… but I lost it and can’t seem to find it to reply. I’m so sorry! I’m having some glitchy issues with notes. Can you remind me here or via DM?
"Soft" eugenics. I like it. It has a pleasant sound reminiscent of diet Coke, light beer, and mild cigarettes. But for eugenics since that's what we do in 2025 of course. I'll have to give it a try sometime...
That’s exactly how absurd it is. Just like those things you mentioned, they’re basically trying to brand eugenics into something palatable to the masses. They’re trying to make it seem healthy and “ok” when it’s anything but.
It’s social murder, and that will never be “soft”.
Well said, spot on and once again a very sad commentary on the state of society - we have truly forgotten how to care - Bob
We have definitely forgotten how to care, but I won’t stop trying to remind people that we can be better!
This really struck a chord with me ! About ten years ago my doctor approved me for disability tax credit and I inquired about odsp
They told me I had too much in savings couldn’t have more than 5000 so I didn’t apply and had to take a minimum wage retail job that paid 1000 a month
I can only work 20 hours a week
Were you able to get the DTC at least? If so you will hopefully get the new CDB as long as you don’t live in Alberta.
It’s really punitive though. They don’t want us to be able to get ahead. They give the absolute bare minimum and make people jump through tremendous hoops just to get that.
This was so well written and inspiring to anger and action. Thank you!
You’re welcome! Thank you for reading!
I can’t believe people are so cold to us and yes I agree 1100 would be too little for most people luckily I live at home and don’t have to pay rent
Your article nailed everything I try to explain to relatives and friends. Discussions lead me to cut them off and out of my life.
I'm glad it was helpful! I'm hoping it's accessible enough that people can share it with friends and family who might be reachable.
Yes I got the dtc as my doctor approved it and I got a great tax refund last 2 years because of it ! 2000 k when I should have broke even ! This extra will help at least it’s not considered income so it’s tax free ! I live in Ontario
That’s great! So glad you were able to get approved and even got a refund!
Yes that worked out surprisingly well ! The CRA is good to me I always get a bigger refund than i think 😝
Alberta is the Texas of Canada, a truly awful place. I love Canada but I'll never visit Alberta again.
I'm so sad by how things have gone in Alberta. I lived in Calgary for two years and explored the whole province, I always wanted to go back. Can't see that happening now.
Thank you for addressing this much-needed topic, as it is very timely and personal for me. In the US things are even worse, as many are only eligible for SSI, the maximum federal monthly payment is $947, and savings are capped at $2000. To get even this small amount can take years, years in which one has to show no income coming in, and years in which one has to continually prove one's activities of daily living are too comprised to do any theoretical job whether practical or not. This has led to many being homeless or living in their cars. My disability story begins with a vaccine injury at the age of four which resulted in a coma, then pesticide poisoning at the age of 10 which left me bedridden for years, and finally a stroke after a massive herbicide exposure three years ago which culminated in severe EHS after an adverse reaction to two successive brain MRIs. I have never been able to work and have been labeled disabled by three different doctors. However, I have not been able to get Social Security disability because SS requires medical records every three months and my parents could not afford the exorbitant costs of environmental medicine doctors, those who specialize in MCS and EHS and who do not accept insurance, to provide the necessary documentation. My parents also did not see the point when the disability payments are even smaller for dependent children and adults, and in an unspoken agreement provided for me throughout their lives, while I was expected to help them throughout theirs. This arrangement was far from ideal, as I was psychologically abused and taken advantage of; nonetheless, I endured until their recent deaths - my mother last year, and my father in March. (I never left to date or marry, as I did not have the health to do so.) My parents died without wills and without making any sort of provisions for me. I am now without an income and facing homelessness. The family home I have lived in for decades is set to be divided amongst myself, my sister, and two half-siblings who I have not seen in decades. My siblings have openly stated that they will not help me in any way and will not allow me to stay in the home unless I buy out their portions at approximately $100,000 which they know I do not have. Because of my sensitivities and finances, I have nowhere else to go. I still cannot get disability due to the lack of medical records, and I certainly do not have the money at this time to pay environmental physicians' hourly fees ranging from $600 - 1500. I have not even been able to find a decent therapist that will accept my Medicaid insurance to deal with my losses and this overwhelming stress. Since my dad's death, I have not been able to somehow magically find work outside the home due to my severe environmental sensitivities, nor have I miraculously found a way to deal with my EHS and extreme fatigue to be able to work remotely. Out of desperation, I started a GoFundMe but due to a lack of a social circle or social media presence after fees it netted about $2100. In order to obtain even that amount of money, I had to become a virtual beggar and publicly humiliate myself by putting my health and loss story on display and then deal with ignorant and ableist daily FB harassment from strangers and casual acquaintances, as well as harassing phone calls, and even a handwritten note from one person saying among other things that "she could not help me retire forever." I do not have the health to endure homelessness, and the stress of this situation has worsened my health conditions, and after the stroke, I was released from the hospital with the warning to avoid stress or I could have a more intense stroke that could result in death or complete incapacitation. In the end, it is quite sobering to realize that there is not an adequate equally accessible safety net for the ill and disabled, and it is equally sobering, if not more so, to realize one's own family members and few "friends" are fine with eugenics, as they have all left me to die including my parents. Speaking of eugenics, I can't help but think of the Canadian news story from 2022 in which a lady from MCS applied for MAID because she could not find accessible safe housing. Her life was saved with a GFM that netted $65,000, while others with MCS in the same year were not so lucky and went through with MAID. I simply do not understand a world in which the lives of the disabled are not valued, and where your ability to make money, inherit money, or have a supportive spouse or other family members determines not only if you will live or die, but if you live, the quality of your life, as being ill is not cheap.
I'm so sorry to hear all of this Janine, and I remember the person you're speaking of with MCS. I suspect she was able to have such a successful GoFundMe because the media picked up her story.
How many people will we never hear about? Far too many.
So many are in need of help and often it's those with the least who are willing to provide any kind of financial support. The disability community really does try and show up for one another, but most of us are all struggling because we've been forced into legislative poverty.
I sincerely hope that you are able to find somewhere safe to live. My MCAS is really bad and environment plays a huge role, I have a lot of triggers in my apartment that I know are making things worse but it's nearly impossible to find a safe place to move.
Sending gentle hugs.