This thread has allowed me to fight another day. It's been 32 yrs of accidents, not timely care and it cost me my life. My husband left me because a surgery he told me to get for our family crippled me. I woke up in the worst pain I've ever had and nothing nothing controlled it. I couldn't walk without a walker and was in a hospital bed for 8 mos. I had 2 children. Our income went from $70,000 to ten. To top it off my 21 yr old son acquired blood clots which I was told would cost his life. No insurance. I borrowed oxygen and my body was falling apart. I couldn't walk in a swimming pool. I had a subsequent fusion on my neck from yet another injury. I experience pain on a scale that requires my full attention. I'm tired of hiding, making excuses and perpetual disappointment. I have a right to better healthcare with adequate diagnosis and pain treatment. I was on opioids which was the only thing that helped. I still had pain but I would cope. Then it was taken away abruptly. I knew the risks. Doing nothing is just short of malpractice. Millions and millions of us are in this boat. Be more than kind. See me and ask occasionally how we feel. The slightest touch is so painful it makes me jump out of my skin.
I’m so glad this has helped you fight another day, but I’m sorry for the suffering you’re going through. I think universal and compassionate healthcare should be a basic human right, and I hope one day it will be!
My heart breaks for you. I am so relieved that when I needed a spinal fusion I was considered too young to have it. The fear of chronic pain is what stops me from getting a hysterectomy that would probably help improve my quality of life. It’s just not worth the risk though, especially because I will still be disabled since my uterus isn’t the thing that disabled me. It could potentially save me a lot of suffering, or it could be what ends me. And I just don’t trust it to work out so I’m not doing that.
I don’t think I knew you were considering a hysterectomy Maggie. If I can ever help, let me know! I was in what sounds like a similar situation… the hysterectomy wasn’t going to be a cure but would relieve a significant source of suffering… and I’m glad I did it. Admittedly I was much younger at the time and the anemia had become life threatening so that did force my hand.
I couldn't agree more with all of this! I have been working on a photographic fine art series where I "show" what it is like to be chronically ill and it is getting a lot of attention in galleries and museums. I think there are a lot of us (including gallery directors and curators) who really need the world to understand. You can see the bulk of this series so far on my website www.patriciafortlage.com/lemonade if you are interested. I have also started using Substack to share, but I am not as prolific of a writer. That being said, I do what I can!
Thank you for sharing Patricia! You have beautiful artwork (and welcome to Substack as well!)
I think when it comes to chronic illness we all do what we can to contribute in the ways that most make sense for us, so I love that you’re using art to express the experience.
I often struggle with graphics for my articles as I’m not a visual person at all, will send you a message if you don’t mind!
This is beautiful, I signed up for your newsletter. It’s the least we can do for each other, even if I don’t have the energy to give it my full attention I would like to think that subscribing and opening it and looking at it does something to support. 💚
Very insightful comment - In many ways chronic illness is like an iceberg. Ninety percent of it exists below the surface, away from prying eyes. As I have said before, a large segment of society has lost it's compassion - the golden rule has become severely tarnished - regards as always, Bob
Yes we need more people to remember the golden rule! And if I can help people understand that they only see the tip of a disabled person’s suffering, I will have accomplished my goal.
Ugh, I've always disliked this perverse incentive structure. When my son was K-12 age, "perfect attendance" never seemed like something that I should push for. What....if he had a cold or the flu, I was supposed to still send him to school, where he would be miserable and probably get other people sick? Knowing that the school/district had an incentive to encourage borderline cases to just show up, because part of their funding was attendance-dependent....ugh.
So yeah, this habit of ignoring one's own health or if you might spread a contagious disease to other people starts young.
I was almost expelled in high school when I had mono (which I caught at the school because there was an outbreak in the cafeteria).
I had a particularly bad case, and despite keeping my grades up working from home, the school wanted to expel me because they said it was bad “optics” that I was doing so well without attending any classes.
Thankfully my parents fought for me, but I never forgot that. How judged I felt. How scared I was to lose an entire year’s school just for being sick.
Chronically ill kids are often scared, and that trauma follows them into adulthood.
I was able to read before I started kindergarten so I was put ahead for reading class and math class, I would spend most of the day with my class but when it was time for reading I would go upstairs to second grade, or when I was in fourth grade I would go across the hall to fifth grade math and reading. BUT my attendance was awful. I was still scoring excellent grades even in the higher level classes, but they sat me down and told me I would have to go back to my classroom for reading because they couldn’t reward someone who didn’t show up for school.
So once I had to go back to my regular grade level I came to school even less because it was so boring it was like torture.
Imagine telling a kid they can’t continue learning new things because they aren’t showing up enough even though they consistently show they are learning those things even only being there half the time?
Same here! Ahead of my class, often taking courses a grade above me but constantly chided for my attendance and lack of performance in gym and sports. By grade ten I was speaking three languages and on track to graduate a year early … but all they cared about was optics. It was quite the lesson in ableism even if I didn’t understand the word at the time.
They actually tried to tell me it wouldn’t be fair to the other kids who showed up every day. I didn’t understand how it was fair to me to make me show up every day if I could be more successful than the other kids only coming three days a week, even in a grade level above.
But yeah, optics. It was the 70s and 80s so nobody bothered trying to figure out why I wasn’t in school much. But then I have to constantly remind myself that they didn’t have today’s knowledge back then.
Hahaha yeah, gym. Ugh. The ONLY classes I ever actually came close to “failing” were 7th grade science (because I wouldn’t cut open the animals) & gym because I wouldn’t participate. 😂
Are you guys making fun of people who 'always' show up? You know that takes a lot of discipline and even people who aren't chronically ill can't do it. You seem to be making fun of healthy people because 'being there' is important to them. And, for a lot of jobs, the primary characteristic of a good worker is to always show up, on time and ready to work. I think having perfect attendance IS something to value. It shows that the person is dependable and serious. But you two seem to be slagging anyone that does it.
Same thing with jobs, it's like you're a bad employee because you get sick (or your child does) have a car that breaks down etc. Imagine trusting your employees to call off for legit reasons, instead of treating them like delinquent children.
There is so much pressure to never miss work, school, commitments etc. I think everyone would be much healthier and happier if we understood and respected that we all have limits and there will be times we need to take a break. It’s ok to take a break.
Ya, and I'm sure no one would take advantage of a workplace that had 'unlimited' sick time. Do you know other humans? Do you know most people will push it to the limit, whatever the limit is? So if you allow your employees unlimited sick days, there would be some totally healthy workers that would show up for a week per year.
Attendance awards at school are to train us to become good little worker bees working to create billions for our owners, who never take a day off work for something as non-profitable as illness. Every adult I've met has said they feel guilty (or have had to learn to not feel guilty) when they call in sick, even when they are so sick they can't stand up. And when we become disabled or chronically ill and are no longer able to be 'productive' we have to work through feelings of guilt on top of the pain, suffering, and grief of losing our lives.
I felt so much guilt when I had to call in sick for work. There were times I pushed my body so hard that the paramedics had to be called to my workplace after I passed out at my job.
It’s awful how badly we feel for doing something that we need in order to be safe and healthy. Needing to take a take off because you’re sick shouldn’t be seen as a “failure”, but we are trained to see it that way from a very young age.
What's your alternative? Kids don't need to ever show up to class? Then why even have school. Let's make it all online because we see how well that served everyone. The Covid generation is going to produce more idiots than in the rest of history combined. Maybe that's what they want. I love how you guys are making fun of people who have perfect attendance. In my view, those people are strong and have a work ethic worth admiring.
“What if we stopped hiding? What if we said, loudly and proudly, this is who we are and we ARE suffering. We’re in pain. We’re scared. We’re exhausted. Look at us. Don’t look away.
What if we demanded visibility. Insisted on taking up space. Refused to say ‘I’m fine’ when we aren’t.
What if we put our focus and energy into being our true authentic selves, suffering and all, so that people could begin to process and understand the realities of chronic illness?”
If (…when…) all this started happening, we’d start healing 💜
It almost feels like it’s here. Witnessing you on your journey doing it. When I can only imagine what you’ve had to overcome to free yourself in this way. Leading, encouraging, inspiring others to do the same.
Surely all it takes is for those of us on an individual level doing it to empower more and more of us? It creates a ripple effect. And I look forward to that tidal wave of us all accumulating together. We’ll wash out what has been and cleanse the shores with what will be. Acceptance. Peace. Recognition. Validation. Witnessing. Truth. Authenticity, healing.
I’m almost certain the time is coming. (Although I have been saying this since 2020.) We are in the sixth year of a mass disabling event, people haven’t been able to hide it around here for awhile. I live in New England and we’ve had a pharmacist shortage for a couple years now, because people in Customer facing positions can’t just push through and pretend to be well after they’ve developed long Covid.
I believe that too. I feel it already is happening in so many ways. I say this with confidence only from personal circumstances in that I hid my own severe illness for 20 years until o couldn’t hide it anymore.
I’ve been on a monumental healing journey since. I stopped hiding. I stopped looking away. My body demanded visibility (by me). My body and my needs insisted on taking up space. It took me a few years to stop saying “yeah I’m good thanks” and being entirely honest with how I was feeling.
By year 5/6 I was putting all my available energy into being my true authentic self (and didn’t spend it with anyone where I couldn’t be that way). I was able to fully process and understand the horror of what I’d lived with and endured all that time.
Leaving me spending the entirety of last year wondering what significance of being my true authentic self had with my ever improving health. I’m still not at the bottom of it but I’m certain there is big one. And none of it came from anyone around me changing, I had to be that change myself. (The most challenging bit)
What does this mean? What's your true authentic self? Telling everyone how shitty you feel all the time or showing them your open sores? I don't know where you live but I don't see chronically ill people being pushed into the shadows. I'm very confused. If you have a chronic illness that isn't visible (like you are in a wheelchair), how do you become 'visible'? You go around telling all your coworkers how sick you are all the time? I'm not sure this would lead to what you think it would lead to.
They are really good questions. It’s a lot to sit with.
For me, I didn’t tell anyone what I was living with for 20 years. I kept it hidden. It was only when I was physically unable to get out of bed to go to work anymore that anyone found out. Only to find no one (including the medical professionals) were recognising the severity of it even at that extent.
That’s when things started changing for me then. But not by anyone around me, it all started happening from within.
It’s a lot to put in a comment as the questions you rightfully ask are such big questions. I did write a blog called invisible me the other year about some of the ways in which I was making myself seen:
The main reason I smile and say 'I'm okay' is because I don't have the energy to waste on explaining how and why I'm struggling each time someone asks why I haven't hidden my pain. I fully understand where you're coming from, and I agree we should stop pretending to be 'fine' for other people's comfort, but we also have to remember that our needs should come first (because no one else is going to prioritise them), and often that means pretending to be okay when we're really not.
Easier said than done. And I don't think it's rude to ask someone why they answered that they're not okay (I would actually find it odd if someone didn't follow up on that). I'm not worried about being rude (I'm Autistic and regularly told that I am rude for saying my beliefs, or asking for further explanations of things), but I do care about my health enough to not put myself into a position where I have to expend energy I don't have.
Yeah I can relate, my answer is “OK” often. But it’s because to me it’s relative. If I’m not currently vomiting or unable to get out of bed so that person can even see me to ask me how I’m doing, relatively speaking I’m actually doing OK.
I have a good friend who I love very much and even though she doesn’t live a cautious lifestyle she’s very cautious around me and completely understanding of my cautious lifestyle.
She had something really important to do on a Monday and she took the day off from work to do it. At the end of the week before she went out with some friends and she woke up on Monday so sick she couldn’t even get out of bed & she was so mad about it. She didn’t need me to explain why I’m cautious but I did anyway. I was like yeah this is terrible can you imagine if you just never felt better? That’s what happened to me, don’t let it happen to you.
She didn’t need to be reminded about why I live the way that I live, but she’s welcome to use my life as a cautionary tale in case anyone hassles her for trying to prevent herself from getting sick.
I do the same thing when someone else is sick - remind them that my life (or worse) can be the cost of not stopping to take care of themselves and recover from illness.
And I think I do usually say 'I'm okay', or 'same old, same old' to those who know about my disability but have been proven not to understand I don't have energy to explain what exactly what's up on that day. I think only those who spend days with me at a time have any idea what my life is actually like.
I wish I had known not resting could cause it to be permanent. I didn’t understand chronic illness at all until it happened to me. I couldn’t really conceive of catching something a doctor couldn’t fix. My little brother had type one diabetes but back then it was thought to be genetic only, but now they know it can be triggered by illness or stress.
Sending lots of love and care. Our society is designed to teach us to be good little worker bees - we are subconsciously taught that out worth is tied to our productivity and ability to work, and therefore illness is a weakness. It is the fault of Capitalism, not us, that we push through, unfortunately often to our detriment.
If you always feel sick, that sucks and I wouldn't want that for myself or family. But what is society supposed to do about that? Especially if it's not easily treatable. I must be an abelist because I truly can't understand what you would want me to do about it. I feel bad for you and if I could make you better somehow I would. But I'm not a doctor or a magic healer. What is it you want? Do you want everyone to wear masks 24/7? Because that's never going to happen. I'm sorry, it's the truth. People hated it and they started to hate each other because of it. So what else? More sick time? ok. Up to a limit or that will start being massively abused by healthy people. More funding for certain diseases? OK but there's a limit on what can be spent on a weird disease that only affects a small percentage of people. You call society abelist but you don't really offer what we can realistically do.
Which weird disease are you referring to? Masks prevent the flu, TB (which is circulating now), measles (which is also going around now). You do you, good luck to your family.
If you’re sincerely asking I would have society NOT HARASS people who care about their own health and their family to not cry about wearing a mask around other people? Why are y’all so obsessed with infecting everyone? It’s gross. And ableist.
Here is one answer to the question posed in the title of your post (which is especially relevant for the last few years with the massive increase in chronically ill people since the roll out of the mRNA injections globally).
I decided early on in my long COVID that I was not only not going to hide, I was going to almost over share, including pictures and videos of what daily life is like. I think it’s why there aren’t many in my life who don’t believe me. The ones who haven’t have all been the MAGA in my family, and I can’t waste my energy trying to convince them.
Slightly different take on something: I don’t love “how are you today?” I feel like that question also comes loaded with expectations that you should answer differently than the last time they asked. Also, what does a day or today really mean to the chronically ill? It says nothing about yesterday or tomorrow in the land of changing, unpredictable symptoms. I much prefer, “how are you these days?” It lets me talk about generally how I’ve been feeling, the trend of it more than the ups and downs of an individual day. Just my preference though. I think it’s great if non-disabled people ask, “how would you prefer I check in?” But that would be such a gold standard, I recognize.
Additionally I have fallen dozens of times sometimes with injury. I've seen a hundred doctors over this. They want to talk about everything but chronic pain. It's a garbage can term to cover undiagnosed and untreated conditions
I had a full hysterectomy at 41. My uterus was attached to my abdomen with an inch of scar tissue. It helped me have one less thing to worry about. They removed everything. I didn't know that spinal fusions would cripple me.
This thread has allowed me to fight another day. It's been 32 yrs of accidents, not timely care and it cost me my life. My husband left me because a surgery he told me to get for our family crippled me. I woke up in the worst pain I've ever had and nothing nothing controlled it. I couldn't walk without a walker and was in a hospital bed for 8 mos. I had 2 children. Our income went from $70,000 to ten. To top it off my 21 yr old son acquired blood clots which I was told would cost his life. No insurance. I borrowed oxygen and my body was falling apart. I couldn't walk in a swimming pool. I had a subsequent fusion on my neck from yet another injury. I experience pain on a scale that requires my full attention. I'm tired of hiding, making excuses and perpetual disappointment. I have a right to better healthcare with adequate diagnosis and pain treatment. I was on opioids which was the only thing that helped. I still had pain but I would cope. Then it was taken away abruptly. I knew the risks. Doing nothing is just short of malpractice. Millions and millions of us are in this boat. Be more than kind. See me and ask occasionally how we feel. The slightest touch is so painful it makes me jump out of my skin.
I’m so glad this has helped you fight another day, but I’m sorry for the suffering you’re going through. I think universal and compassionate healthcare should be a basic human right, and I hope one day it will be!
My heart breaks for you. I am so relieved that when I needed a spinal fusion I was considered too young to have it. The fear of chronic pain is what stops me from getting a hysterectomy that would probably help improve my quality of life. It’s just not worth the risk though, especially because I will still be disabled since my uterus isn’t the thing that disabled me. It could potentially save me a lot of suffering, or it could be what ends me. And I just don’t trust it to work out so I’m not doing that.
I don’t think I knew you were considering a hysterectomy Maggie. If I can ever help, let me know! I was in what sounds like a similar situation… the hysterectomy wasn’t going to be a cure but would relieve a significant source of suffering… and I’m glad I did it. Admittedly I was much younger at the time and the anemia had become life threatening so that did force my hand.
I couldn't agree more with all of this! I have been working on a photographic fine art series where I "show" what it is like to be chronically ill and it is getting a lot of attention in galleries and museums. I think there are a lot of us (including gallery directors and curators) who really need the world to understand. You can see the bulk of this series so far on my website www.patriciafortlage.com/lemonade if you are interested. I have also started using Substack to share, but I am not as prolific of a writer. That being said, I do what I can!
Thank you for sharing Patricia! You have beautiful artwork (and welcome to Substack as well!)
I think when it comes to chronic illness we all do what we can to contribute in the ways that most make sense for us, so I love that you’re using art to express the experience.
I often struggle with graphics for my articles as I’m not a visual person at all, will send you a message if you don’t mind!
Thank you for the kind words. And yes, message away!
This is beautiful, I signed up for your newsletter. It’s the least we can do for each other, even if I don’t have the energy to give it my full attention I would like to think that subscribing and opening it and looking at it does something to support. 💚
Yes I agree! It's such lovely work and I'm looking forward to seeing more.
Thank you for your support and encouragement, Maggie!
Very insightful comment - In many ways chronic illness is like an iceberg. Ninety percent of it exists below the surface, away from prying eyes. As I have said before, a large segment of society has lost it's compassion - the golden rule has become severely tarnished - regards as always, Bob
Yes we need more people to remember the golden rule! And if I can help people understand that they only see the tip of a disabled person’s suffering, I will have accomplished my goal.
"Attendance awards are given out in school"
Ugh, I've always disliked this perverse incentive structure. When my son was K-12 age, "perfect attendance" never seemed like something that I should push for. What....if he had a cold or the flu, I was supposed to still send him to school, where he would be miserable and probably get other people sick? Knowing that the school/district had an incentive to encourage borderline cases to just show up, because part of their funding was attendance-dependent....ugh.
So yeah, this habit of ignoring one's own health or if you might spread a contagious disease to other people starts young.
I was almost expelled in high school when I had mono (which I caught at the school because there was an outbreak in the cafeteria).
I had a particularly bad case, and despite keeping my grades up working from home, the school wanted to expel me because they said it was bad “optics” that I was doing so well without attending any classes.
Thankfully my parents fought for me, but I never forgot that. How judged I felt. How scared I was to lose an entire year’s school just for being sick.
Chronically ill kids are often scared, and that trauma follows them into adulthood.
I was able to read before I started kindergarten so I was put ahead for reading class and math class, I would spend most of the day with my class but when it was time for reading I would go upstairs to second grade, or when I was in fourth grade I would go across the hall to fifth grade math and reading. BUT my attendance was awful. I was still scoring excellent grades even in the higher level classes, but they sat me down and told me I would have to go back to my classroom for reading because they couldn’t reward someone who didn’t show up for school.
So once I had to go back to my regular grade level I came to school even less because it was so boring it was like torture.
Imagine telling a kid they can’t continue learning new things because they aren’t showing up enough even though they consistently show they are learning those things even only being there half the time?
Same here! Ahead of my class, often taking courses a grade above me but constantly chided for my attendance and lack of performance in gym and sports. By grade ten I was speaking three languages and on track to graduate a year early … but all they cared about was optics. It was quite the lesson in ableism even if I didn’t understand the word at the time.
They actually tried to tell me it wouldn’t be fair to the other kids who showed up every day. I didn’t understand how it was fair to me to make me show up every day if I could be more successful than the other kids only coming three days a week, even in a grade level above.
But yeah, optics. It was the 70s and 80s so nobody bothered trying to figure out why I wasn’t in school much. But then I have to constantly remind myself that they didn’t have today’s knowledge back then.
Hahaha yeah, gym. Ugh. The ONLY classes I ever actually came close to “failing” were 7th grade science (because I wouldn’t cut open the animals) & gym because I wouldn’t participate. 😂
Are you guys making fun of people who 'always' show up? You know that takes a lot of discipline and even people who aren't chronically ill can't do it. You seem to be making fun of healthy people because 'being there' is important to them. And, for a lot of jobs, the primary characteristic of a good worker is to always show up, on time and ready to work. I think having perfect attendance IS something to value. It shows that the person is dependable and serious. But you two seem to be slagging anyone that does it.
Same thing with jobs, it's like you're a bad employee because you get sick (or your child does) have a car that breaks down etc. Imagine trusting your employees to call off for legit reasons, instead of treating them like delinquent children.
There is so much pressure to never miss work, school, commitments etc. I think everyone would be much healthier and happier if we understood and respected that we all have limits and there will be times we need to take a break. It’s ok to take a break.
Ya, and I'm sure no one would take advantage of a workplace that had 'unlimited' sick time. Do you know other humans? Do you know most people will push it to the limit, whatever the limit is? So if you allow your employees unlimited sick days, there would be some totally healthy workers that would show up for a week per year.
Attendance awards at school are to train us to become good little worker bees working to create billions for our owners, who never take a day off work for something as non-profitable as illness. Every adult I've met has said they feel guilty (or have had to learn to not feel guilty) when they call in sick, even when they are so sick they can't stand up. And when we become disabled or chronically ill and are no longer able to be 'productive' we have to work through feelings of guilt on top of the pain, suffering, and grief of losing our lives.
I felt so much guilt when I had to call in sick for work. There were times I pushed my body so hard that the paramedics had to be called to my workplace after I passed out at my job.
It’s awful how badly we feel for doing something that we need in order to be safe and healthy. Needing to take a take off because you’re sick shouldn’t be seen as a “failure”, but we are trained to see it that way from a very young age.
What's your alternative? Kids don't need to ever show up to class? Then why even have school. Let's make it all online because we see how well that served everyone. The Covid generation is going to produce more idiots than in the rest of history combined. Maybe that's what they want. I love how you guys are making fun of people who have perfect attendance. In my view, those people are strong and have a work ethic worth admiring.
You are a talented insightful writer and an inspiration. Thank you for using your spoons to help others.
Thank you Claire! I really appreciate that and I’m glad you enjoyed the article.
“What if we stopped hiding? What if we said, loudly and proudly, this is who we are and we ARE suffering. We’re in pain. We’re scared. We’re exhausted. Look at us. Don’t look away.
What if we demanded visibility. Insisted on taking up space. Refused to say ‘I’m fine’ when we aren’t.
What if we put our focus and energy into being our true authentic selves, suffering and all, so that people could begin to process and understand the realities of chronic illness?”
If (…when…) all this started happening, we’d start healing 💜
I agree that if and when this happens, we will start seeing real healing!
Some of us are already experiencing it at the individual level… just imagine what could happen at a societal level if we all agreed to stop hiding?
It almost feels like it’s here. Witnessing you on your journey doing it. When I can only imagine what you’ve had to overcome to free yourself in this way. Leading, encouraging, inspiring others to do the same.
Surely all it takes is for those of us on an individual level doing it to empower more and more of us? It creates a ripple effect. And I look forward to that tidal wave of us all accumulating together. We’ll wash out what has been and cleanse the shores with what will be. Acceptance. Peace. Recognition. Validation. Witnessing. Truth. Authenticity, healing.
No more hiding.
I’m almost certain the time is coming. (Although I have been saying this since 2020.) We are in the sixth year of a mass disabling event, people haven’t been able to hide it around here for awhile. I live in New England and we’ve had a pharmacist shortage for a couple years now, because people in Customer facing positions can’t just push through and pretend to be well after they’ve developed long Covid.
I believe that too. I feel it already is happening in so many ways. I say this with confidence only from personal circumstances in that I hid my own severe illness for 20 years until o couldn’t hide it anymore.
I’ve been on a monumental healing journey since. I stopped hiding. I stopped looking away. My body demanded visibility (by me). My body and my needs insisted on taking up space. It took me a few years to stop saying “yeah I’m good thanks” and being entirely honest with how I was feeling.
By year 5/6 I was putting all my available energy into being my true authentic self (and didn’t spend it with anyone where I couldn’t be that way). I was able to fully process and understand the horror of what I’d lived with and endured all that time.
Leaving me spending the entirety of last year wondering what significance of being my true authentic self had with my ever improving health. I’m still not at the bottom of it but I’m certain there is big one. And none of it came from anyone around me changing, I had to be that change myself. (The most challenging bit)
What does this mean? What's your true authentic self? Telling everyone how shitty you feel all the time or showing them your open sores? I don't know where you live but I don't see chronically ill people being pushed into the shadows. I'm very confused. If you have a chronic illness that isn't visible (like you are in a wheelchair), how do you become 'visible'? You go around telling all your coworkers how sick you are all the time? I'm not sure this would lead to what you think it would lead to.
They are really good questions. It’s a lot to sit with.
For me, I didn’t tell anyone what I was living with for 20 years. I kept it hidden. It was only when I was physically unable to get out of bed to go to work anymore that anyone found out. Only to find no one (including the medical professionals) were recognising the severity of it even at that extent.
That’s when things started changing for me then. But not by anyone around me, it all started happening from within.
It’s a lot to put in a comment as the questions you rightfully ask are such big questions. I did write a blog called invisible me the other year about some of the ways in which I was making myself seen:
https://open.substack.com/pub/warriorwithin/p/invisible-me
I wrote this in to my local paper on March 15th. They recently published it.
Is it online ? Do you happen to have a link?
https://www.gazettenet.com/Letter-59986779
Yeah give me a sec
The main reason I smile and say 'I'm okay' is because I don't have the energy to waste on explaining how and why I'm struggling each time someone asks why I haven't hidden my pain. I fully understand where you're coming from, and I agree we should stop pretending to be 'fine' for other people's comfort, but we also have to remember that our needs should come first (because no one else is going to prioritise them), and often that means pretending to be okay when we're really not.
Just refuse to explain to them. They are the rude ones for insisting on an explanation.
Easier said than done. And I don't think it's rude to ask someone why they answered that they're not okay (I would actually find it odd if someone didn't follow up on that). I'm not worried about being rude (I'm Autistic and regularly told that I am rude for saying my beliefs, or asking for further explanations of things), but I do care about my health enough to not put myself into a position where I have to expend energy I don't have.
Yeah I can relate, my answer is “OK” often. But it’s because to me it’s relative. If I’m not currently vomiting or unable to get out of bed so that person can even see me to ask me how I’m doing, relatively speaking I’m actually doing OK.
I have a good friend who I love very much and even though she doesn’t live a cautious lifestyle she’s very cautious around me and completely understanding of my cautious lifestyle.
She had something really important to do on a Monday and she took the day off from work to do it. At the end of the week before she went out with some friends and she woke up on Monday so sick she couldn’t even get out of bed & she was so mad about it. She didn’t need me to explain why I’m cautious but I did anyway. I was like yeah this is terrible can you imagine if you just never felt better? That’s what happened to me, don’t let it happen to you.
She didn’t need to be reminded about why I live the way that I live, but she’s welcome to use my life as a cautionary tale in case anyone hassles her for trying to prevent herself from getting sick.
I do the same thing when someone else is sick - remind them that my life (or worse) can be the cost of not stopping to take care of themselves and recover from illness.
And I think I do usually say 'I'm okay', or 'same old, same old' to those who know about my disability but have been proven not to understand I don't have energy to explain what exactly what's up on that day. I think only those who spend days with me at a time have any idea what my life is actually like.
I wish I had known not resting could cause it to be permanent. I didn’t understand chronic illness at all until it happened to me. I couldn’t really conceive of catching something a doctor couldn’t fix. My little brother had type one diabetes but back then it was thought to be genetic only, but now they know it can be triggered by illness or stress.
Sending lots of love and care. Our society is designed to teach us to be good little worker bees - we are subconsciously taught that out worth is tied to our productivity and ability to work, and therefore illness is a weakness. It is the fault of Capitalism, not us, that we push through, unfortunately often to our detriment.
If you always feel sick, that sucks and I wouldn't want that for myself or family. But what is society supposed to do about that? Especially if it's not easily treatable. I must be an abelist because I truly can't understand what you would want me to do about it. I feel bad for you and if I could make you better somehow I would. But I'm not a doctor or a magic healer. What is it you want? Do you want everyone to wear masks 24/7? Because that's never going to happen. I'm sorry, it's the truth. People hated it and they started to hate each other because of it. So what else? More sick time? ok. Up to a limit or that will start being massively abused by healthy people. More funding for certain diseases? OK but there's a limit on what can be spent on a weird disease that only affects a small percentage of people. You call society abelist but you don't really offer what we can realistically do.
Which weird disease are you referring to? Masks prevent the flu, TB (which is circulating now), measles (which is also going around now). You do you, good luck to your family.
If you’re sincerely asking I would have society NOT HARASS people who care about their own health and their family to not cry about wearing a mask around other people? Why are y’all so obsessed with infecting everyone? It’s gross. And ableist.
Ugh yes. All of this. Thank you for writing and sharing this.
You’re so welcome. Thank you for reading!!
Thank you for encouraging compassion and understanding in a world that's rapidly going the other way.
You’re welcome. Thank you for reading! I can only hope my tips and suggestions make life a little easier for someone else.
Here is one answer to the question posed in the title of your post (which is especially relevant for the last few years with the massive increase in chronically ill people since the roll out of the mRNA injections globally).
https://www.youtube.com/watch?v=KvQ5yiBcqOs
I decided early on in my long COVID that I was not only not going to hide, I was going to almost over share, including pictures and videos of what daily life is like. I think it’s why there aren’t many in my life who don’t believe me. The ones who haven’t have all been the MAGA in my family, and I can’t waste my energy trying to convince them.
Slightly different take on something: I don’t love “how are you today?” I feel like that question also comes loaded with expectations that you should answer differently than the last time they asked. Also, what does a day or today really mean to the chronically ill? It says nothing about yesterday or tomorrow in the land of changing, unpredictable symptoms. I much prefer, “how are you these days?” It lets me talk about generally how I’ve been feeling, the trend of it more than the ups and downs of an individual day. Just my preference though. I think it’s great if non-disabled people ask, “how would you prefer I check in?” But that would be such a gold standard, I recognize.
Additionally I have fallen dozens of times sometimes with injury. I've seen a hundred doctors over this. They want to talk about everything but chronic pain. It's a garbage can term to cover undiagnosed and untreated conditions
I can see the artwork now. Just a throated scream in a sea of pain. Colors on fire
I let go of the guilt yesterday
I had a full hysterectomy at 41. My uterus was attached to my abdomen with an inch of scar tissue. It helped me have one less thing to worry about. They removed everything. I didn't know that spinal fusions would cripple me.