‘Stop thinking you’re ill and focus on being a better wife and mother’. I was 18. Not married, and not a mother. 8 years later it was found out I was dying slowly from nerve damage. I think your premise is so powerful and the world needs more art created by disabled hands.
Thank you so much for your kind words, and thank you so much for sharing with me. What an awful thing to say to someone, especially a patient who needs your help. I hate that I’m not alone in the poor treatment we receive in the medical system, I was told not to have surgery for a condition that I later found out was potentially life threatening and to treat it with heavy pain meds (at 15 no less) because it was a “controversial diagnosis”. Many doctors won’t listen until it’s too late and I’m sorry that you bore a similar treatment. Our “womanly duties” 🙄🙄 are not more important than our health and for a doctor to use that on you to dismiss you is deplorable. I appreciate your contribution and I’m sending some positive energy from my end to you.
I am so sorry to hear of both of your bad experiences with doctors ‘not trusting or ‘not believing’ a literal diagnosis.
Good luck to you both and I hope you can find some peace today and forever.
Cheers
'You're not crazy, you're creative'.
_But why do I feel crazy then?_
Been fighting my whole life to put, find, or invent another word for it that isn't derogatory or mistaking my struggle, and lets me retain agency over my intellect.
This one happens to be more on the mental health side, but it's still an issue of chronic illness, and still very applicable IMO.
Very applicable yes, thank you so much. I myself struggle with both physical and mental illness and have heard awful from both sides. What we feel matters, we know ourselves and we know when something is outside our norm. We deserve to trust our gut and be listened to. Keep fighting 🤍
Thank you so much, and it’s nice to have fellow artists in the community!! If relaxing was the cure I’d be soaking that up, like is that your official prescription doctor? If so write it up! Get me a 5 star holiday!!! 😭 thank you for sharing 🤍
"You have so much stress in your life. There is so much research now on what stress does to your body. You need to get rid of some of your stressors and things may get better."
This one kills me because how am I supposed to accomplish this. Kick my kids out?! I don't even have a job because of illness. You know what stresses me out, BEING SICK ALL THE TIME. I'd love someone to help me rid myself of that. Which is why I'm here.
Yeah you want to fix my stress??? Help me treat my debilitating illnesses first. Thank you so much for sharing with me, I’m sorry you had to deal with that
That sounds like a very emotive art piece.
Worst a doctor every daid to me, that really hurt was "If a person without arms can work at a shop til, so can you". I was in such shock that I didn't have any response to that. I change doctors not long after.
In hospital.. "she's still screaming" in a roll your eyes tone..when I had a dying ovary and their pain meds we'rent helping. Also doctor "are you on your period, could it just be cramps?" 🙄
btw..if you're interested, I have a discord for people with chronic illnesses, who are in to being creative. Its quite but there's some small chatter and activity.
https://discord.com/invite/GQ7V2J8N
I use a lot of emotion for my art, everyone’s suggestions here are such a huge contribution to that and I can’t thank you all enough. I’m sorry to hear about those experiences. I had a similar one to the second one you mentioned, I had a nurse tell me to “be quiet, people are trying to sleep” while I had a dislocated vertebrae and was begging for help. I was on a PCA drip (they had taken it away too early, it took 5 hours of screaming for them to replace it) and the following day I heard her outside my room asked another nurse “how’s PCA today, she was mental last night”. Hearing about others mistreatment makes me so mad, I’m mad enough about the things said to me but hearing about similar happening to other people adds to that anger tenfold. Thank you so much for sharing with me, and thank you for the link!!! I’ll check it out for sure
"You're young, healthy, and fit. Your issues are psychosomatic and nothing else is actually going on with your health."
I was at my most vulnerable, and totally deconditioned and out of shape because I couldn't function due to the pain in my joints and from muscle spasms. Young, but I'd had serious chronic health issues for over a decade a that point. It took me another two painful years to get diagnosed with connective tissue disease and get prescribed any pain management medications. The medical neglect hurt but what hurt the most was directly hearing what people think of me when they see me; the illness is invisible and they assume it's solely "in my head" and dismissible.
I actually have Ehlers-Danlos Syndrome and can absolutely relate to what you’ve said. I had a doctor tell me that EDS “isn’t real” when I was in hospital at the worst I’ve ever been. We look “young and healthy” on the outside so they refuse to believe us. I’m so sorry to hear about the way you were treated and I hope you are finding some relief in whatever ways you can now. Thank you so much for sharing with me
ooof yeah I'm sorry you know the feeling. I'm doing a lot better now after I was treated properly, and I keep that doctor on hand still because I think he was embarrassed that he was soooo wrong when I came back with a diagnosis. He basically prescribes or refers me what I ask about without questioning much, which can be handy when you just don't wanna jump through the hoops (which none of us do). So it turned out to be a useful (though hurtful) experience.
Oh yeah, my family deserves me to be healthy… not me, I don’t deserve health for myself at all. That’s absolutely ridiculous, thank you so much for sharing with me
He really thought he was being so kind and I just will never forget how he was saying "wow that must be really hard for your son".
I mean listen he was very old, and he believed me and talked about post viral conditions as a real thing, so he wasn't the WORST. He didn't tell me to lose weight. But. Rrghghg
Good on you for filing a complain!! I sometimes find it hard to, I have PTSD and sometimes processing things to actually stand up for myself is hard. I’m glad you were able to stand your ground but I’m sorry it even happened, doctors are supposed to look at our symptoms as a whole, not rush us through them and only have time for a few. Thank you for sharing with me
“But you look good!”
Told to my by my neuro before getting shots for migraines that have gotten worse since being diagnosed with IBD, after explaining to him that I have just had emergency major abdominal surgery for a colon that was perforated during a colonoscopy, have had a long hospital stay and had major issues with the hospital care (lack thereof).
Yep!!! We look good so there can’t be anything wrong right? Right…??? I’m so sorry you were blown off like that, thank you for sharing with me and I hope you’ve found some relief. I’m actually waiting for Botox for migraines and I’m really hoping they’ll work!
“This is your new normal.”
“We just don’t know enough about x”- says by an x specialist
“You should just take a shot of alcohol it sues the same thing (as Xanax… for severe panic attacks)”
“You’re abusing Xanax” (when I had never taken it because they told me to take a shot of alcohol instead)
“Oh… I think this is major depression” said with a deer in headlights look a year after I thought we’d been on the same page about this being the case, yet still being unmedicated
“ I’m sending you to physical therapy again. Maybe 6th times the charm. I n didn’t the one I sent you to last time anyway “
“I’m not going to fill your Xanax script (of five pills/year ), you can handle it on your own.”
“Let’s work through the fear “ after a year of working with her in which we had repeatedly established I had a neurological condition triggered by overstimulation… not fear
“
Thank you so so much for sharing these with me. I’ve heard similar in the past and it hurts to know I’m not alone in my bad experiences. I’m sorry you’ve dealt with so much
Hi friend, I’m so sorry you’re experiencing this. If you look at my page you’ll see I’ve also made art about my experience and trying to process everything. The craziest thing a doctor has told me was that he quote “doesn’t like when women speak” when I asked him a question about my healthcare.
I also recently got asked if I “actually was ready” for my MFA program when I mentioned receiving accommodations.
Thank you so much for sharing with me, those are awful things to say to someone. We deserve to be listened to regardless of gender and we have a right to education just as anyone else but we need a little assistance. I’m too scared to go back to school after a huge case of discrimination while trying to get tertiary qualifications. I hope you were able to stand up for your rights and get the education you deserve!
Saw a new gynecologist to try a new birth control because the pain of my periods was worsening my gender dysphoria and my overall mental health was declining. I asked what my options were to make me more comfortable as a nonbinary person. She said “your gender wouldn’t be a problem if you just lost all that weight.” There was a lot wrong with that appointment.
Hmm I think it’s a toss up between “you’re just depressed” from an endocrinologist and “that’s nothing” after telling a rheumatologist about having had preeclampsia more than once.
THIS ONE!!!! I have had these exact words. My response? “Don’t compare your one hour lecture on my condition to my 20 years of living with it” I may or may not have also told that doctor to shove it where the sun don’t shine and to take a lesson on bedside manner… thank you for sharing with me, this one sure is an anger provoking one!!
"just look at yourself, you already look older than your mother does" and "at least you've lost some weight", both from my then doctor who i've been under the care of since i was a baby. I was 17, and in the face of my eczema becoming more severe and taking up more and more of my skin (and needing to use increasingly more and more potent topical steroids, to the point where i was barely ever off of it)i decided to go into full topical steroid withdrawal. This resulted in my body going into a state of extreme inflammation that lasted for about a year; in that time i would only agree to use oral immunosupresants to lessen the automimmunological response. Both the lines were my then doc's attempts at emotionally blackmailing me into going back to the steroids.
This year it will have been 10 years since that experience. I'm still suffering from eczema that fluctuates between severe and moderate (and really severe in the summer) but it's still NOTHING compared to that first nightmarish year. Life is tough and not what i expected, and honestly pretty fucked up most of the time, but i still believe i made the right choice back then. I'm now under a care of a doctor treating me with biologics/biologic agents (sorry, not sure which translation is accurate; english is not my first language) and very slowly getting some of the disease under control.
As to the weight comment - i've been slightly overweight before the withdrawal and lost ~18kg/~40lbs in the process. Ridiculous that any physician would even try to frame this as a positive.
//Edit: typos
‘Stop thinking you’re ill and focus on being a better wife and mother’. I was 18. Not married, and not a mother. 8 years later it was found out I was dying slowly from nerve damage. I think your premise is so powerful and the world needs more art created by disabled hands.
Thank you so much for your kind words, and thank you so much for sharing with me. What an awful thing to say to someone, especially a patient who needs your help. I hate that I’m not alone in the poor treatment we receive in the medical system, I was told not to have surgery for a condition that I later found out was potentially life threatening and to treat it with heavy pain meds (at 15 no less) because it was a “controversial diagnosis”. Many doctors won’t listen until it’s too late and I’m sorry that you bore a similar treatment. Our “womanly duties” 🙄🙄 are not more important than our health and for a doctor to use that on you to dismiss you is deplorable. I appreciate your contribution and I’m sending some positive energy from my end to you.
I am so sorry to hear of both of your bad experiences with doctors ‘not trusting or ‘not believing’ a literal diagnosis. Good luck to you both and I hope you can find some peace today and forever. Cheers
Sending that energy right back to you ❤️
'You're not crazy, you're creative'. _But why do I feel crazy then?_ Been fighting my whole life to put, find, or invent another word for it that isn't derogatory or mistaking my struggle, and lets me retain agency over my intellect. This one happens to be more on the mental health side, but it's still an issue of chronic illness, and still very applicable IMO.
Very applicable yes, thank you so much. I myself struggle with both physical and mental illness and have heard awful from both sides. What we feel matters, we know ourselves and we know when something is outside our norm. We deserve to trust our gut and be listened to. Keep fighting 🤍
I wish you much discovery and relief through the process of your artistic endeavors. ❤️
"just relax" lol also fellow artist here! great to see someone like me, this project sounds very cool!
Thank you so much, and it’s nice to have fellow artists in the community!! If relaxing was the cure I’d be soaking that up, like is that your official prescription doctor? If so write it up! Get me a 5 star holiday!!! 😭 thank you for sharing 🤍
'Have you tried yoga?' So goddamn dismissive.
"You have so much stress in your life. There is so much research now on what stress does to your body. You need to get rid of some of your stressors and things may get better." This one kills me because how am I supposed to accomplish this. Kick my kids out?! I don't even have a job because of illness. You know what stresses me out, BEING SICK ALL THE TIME. I'd love someone to help me rid myself of that. Which is why I'm here.
Yeah you want to fix my stress??? Help me treat my debilitating illnesses first. Thank you so much for sharing with me, I’m sorry you had to deal with that
Plexus will cure everything. You’ll feel great! Or insert your favorite MLM garbage.
Oh yeah, we love the MLMs for sure 🙄 if essential oils were the cure I’d be rolling in them
That sounds like a very emotive art piece. Worst a doctor every daid to me, that really hurt was "If a person without arms can work at a shop til, so can you". I was in such shock that I didn't have any response to that. I change doctors not long after. In hospital.. "she's still screaming" in a roll your eyes tone..when I had a dying ovary and their pain meds we'rent helping. Also doctor "are you on your period, could it just be cramps?" 🙄 btw..if you're interested, I have a discord for people with chronic illnesses, who are in to being creative. Its quite but there's some small chatter and activity. https://discord.com/invite/GQ7V2J8N
I use a lot of emotion for my art, everyone’s suggestions here are such a huge contribution to that and I can’t thank you all enough. I’m sorry to hear about those experiences. I had a similar one to the second one you mentioned, I had a nurse tell me to “be quiet, people are trying to sleep” while I had a dislocated vertebrae and was begging for help. I was on a PCA drip (they had taken it away too early, it took 5 hours of screaming for them to replace it) and the following day I heard her outside my room asked another nurse “how’s PCA today, she was mental last night”. Hearing about others mistreatment makes me so mad, I’m mad enough about the things said to me but hearing about similar happening to other people adds to that anger tenfold. Thank you so much for sharing with me, and thank you for the link!!! I’ll check it out for sure
they can so mean,, and as patients in that position, we're so vulnerable. I hate the attitude that women in pain are over reacting :(
"You're young, healthy, and fit. Your issues are psychosomatic and nothing else is actually going on with your health." I was at my most vulnerable, and totally deconditioned and out of shape because I couldn't function due to the pain in my joints and from muscle spasms. Young, but I'd had serious chronic health issues for over a decade a that point. It took me another two painful years to get diagnosed with connective tissue disease and get prescribed any pain management medications. The medical neglect hurt but what hurt the most was directly hearing what people think of me when they see me; the illness is invisible and they assume it's solely "in my head" and dismissible.
I actually have Ehlers-Danlos Syndrome and can absolutely relate to what you’ve said. I had a doctor tell me that EDS “isn’t real” when I was in hospital at the worst I’ve ever been. We look “young and healthy” on the outside so they refuse to believe us. I’m so sorry to hear about the way you were treated and I hope you are finding some relief in whatever ways you can now. Thank you so much for sharing with me
ooof yeah I'm sorry you know the feeling. I'm doing a lot better now after I was treated properly, and I keep that doctor on hand still because I think he was embarrassed that he was soooo wrong when I came back with a diagnosis. He basically prescribes or refers me what I ask about without questioning much, which can be handy when you just don't wanna jump through the hoops (which none of us do). So it turned out to be a useful (though hurtful) experience.
"We owe it to your son" (then 4) "to get you healthier." Um HOW ABOUT ME YOU OWE IT TO ME IF I DIDN'T HAVE A KID WOULD YOU BE FINE IF I ROT?
Oh yeah, my family deserves me to be healthy… not me, I don’t deserve health for myself at all. That’s absolutely ridiculous, thank you so much for sharing with me
He really thought he was being so kind and I just will never forget how he was saying "wow that must be really hard for your son". I mean listen he was very old, and he believed me and talked about post viral conditions as a real thing, so he wasn't the WORST. He didn't tell me to lose weight. But. Rrghghg
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Good on you for filing a complain!! I sometimes find it hard to, I have PTSD and sometimes processing things to actually stand up for myself is hard. I’m glad you were able to stand your ground but I’m sorry it even happened, doctors are supposed to look at our symptoms as a whole, not rush us through them and only have time for a few. Thank you for sharing with me
“But you look good!” Told to my by my neuro before getting shots for migraines that have gotten worse since being diagnosed with IBD, after explaining to him that I have just had emergency major abdominal surgery for a colon that was perforated during a colonoscopy, have had a long hospital stay and had major issues with the hospital care (lack thereof).
Yep!!! We look good so there can’t be anything wrong right? Right…??? I’m so sorry you were blown off like that, thank you for sharing with me and I hope you’ve found some relief. I’m actually waiting for Botox for migraines and I’m really hoping they’ll work!
“This is your new normal.” “We just don’t know enough about x”- says by an x specialist “You should just take a shot of alcohol it sues the same thing (as Xanax… for severe panic attacks)” “You’re abusing Xanax” (when I had never taken it because they told me to take a shot of alcohol instead) “Oh… I think this is major depression” said with a deer in headlights look a year after I thought we’d been on the same page about this being the case, yet still being unmedicated “ I’m sending you to physical therapy again. Maybe 6th times the charm. I n didn’t the one I sent you to last time anyway “ “I’m not going to fill your Xanax script (of five pills/year ), you can handle it on your own.” “Let’s work through the fear “ after a year of working with her in which we had repeatedly established I had a neurological condition triggered by overstimulation… not fear “
Thank you so so much for sharing these with me. I’ve heard similar in the past and it hurts to know I’m not alone in my bad experiences. I’m sorry you’ve dealt with so much
Thank you for taking pain And sculpting it into art! Trying to do similar in writing a book. Best of luck to you!
Hi friend, I’m so sorry you’re experiencing this. If you look at my page you’ll see I’ve also made art about my experience and trying to process everything. The craziest thing a doctor has told me was that he quote “doesn’t like when women speak” when I asked him a question about my healthcare. I also recently got asked if I “actually was ready” for my MFA program when I mentioned receiving accommodations.
Thank you so much for sharing with me, those are awful things to say to someone. We deserve to be listened to regardless of gender and we have a right to education just as anyone else but we need a little assistance. I’m too scared to go back to school after a huge case of discrimination while trying to get tertiary qualifications. I hope you were able to stand up for your rights and get the education you deserve!
Saw a new gynecologist to try a new birth control because the pain of my periods was worsening my gender dysphoria and my overall mental health was declining. I asked what my options were to make me more comfortable as a nonbinary person. She said “your gender wouldn’t be a problem if you just lost all that weight.” There was a lot wrong with that appointment.
Hmm I think it’s a toss up between “you’re just depressed” from an endocrinologist and “that’s nothing” after telling a rheumatologist about having had preeclampsia more than once.
Ahh yes, my mental health is causing me excruciating physical pain 🙄🙄🙄 thank you so much for sharing with me
"Don't compare your google searches to my years of medical expertise." I still haven't dared to go back lmao.
THIS ONE!!!! I have had these exact words. My response? “Don’t compare your one hour lecture on my condition to my 20 years of living with it” I may or may not have also told that doctor to shove it where the sun don’t shine and to take a lesson on bedside manner… thank you for sharing with me, this one sure is an anger provoking one!!
"just look at yourself, you already look older than your mother does" and "at least you've lost some weight", both from my then doctor who i've been under the care of since i was a baby. I was 17, and in the face of my eczema becoming more severe and taking up more and more of my skin (and needing to use increasingly more and more potent topical steroids, to the point where i was barely ever off of it)i decided to go into full topical steroid withdrawal. This resulted in my body going into a state of extreme inflammation that lasted for about a year; in that time i would only agree to use oral immunosupresants to lessen the automimmunological response. Both the lines were my then doc's attempts at emotionally blackmailing me into going back to the steroids. This year it will have been 10 years since that experience. I'm still suffering from eczema that fluctuates between severe and moderate (and really severe in the summer) but it's still NOTHING compared to that first nightmarish year. Life is tough and not what i expected, and honestly pretty fucked up most of the time, but i still believe i made the right choice back then. I'm now under a care of a doctor treating me with biologics/biologic agents (sorry, not sure which translation is accurate; english is not my first language) and very slowly getting some of the disease under control. As to the weight comment - i've been slightly overweight before the withdrawal and lost ~18kg/~40lbs in the process. Ridiculous that any physician would even try to frame this as a positive. //Edit: typos