This writing is a gift. In it I find reflected my own twelve year journey to some kind of coherent diagnosis. I am so grateful for the words to articulate some of my experiences. I finally hold two passports, but it feels like I held none forever.
Illness is so intensely private, and especially for a culture which prizes the firmness and freshness of youth, feeling your young adulthood trickle away to middle age in the wasted space of that "stateless" place - the not quite sick enough to be believed and not quite well enough to flourish place ... It's been an exercise in even the well-meaning people who love me wearying. It's hard to hold onto yourself and it's devastating to make the rounds of expensive Stanford specialists who tell you to stop eating so much red meat and do some yoga... And you numbly take your vegetarian-since-childhood self home to lie down again and figure out what you have the energy to do next...
And then you read something that reminds you that you're not the only one.
A very moving piece. Thanks for writing it. Despite living an active, full life spent mostly in the military, I've held both passports since my 20s. My problems were always easy to identify, however. They were right there on the X-Rays. But the part of your piece that really resonated with me was envisioning a world that doesn't exist yet. We're so busy leaning into life as disposable, building insects that we can't see that we could make life better for everyone. If we could get rid of the scarcity mindset and stop believing the least generous interpretation of events and people, we could all live in a slower, softer world. I'd say a more humane world, but let's be honest. We are who we are. The "human" part of humane makes it a misnomer. I still have hope, though. A gift from my daughter.
This is an amazing piece. As a physician, I can empathize with the inability to provide a diagnosis when something is clearly wrong. You have exquisitely described how that feels to the person on the receiving end of that information. Congratulations on you PhD. You clearly have grit and sound like you “rage” against your fatigue by accomplishing things even if from your bed with your cats. Bravo.
Thank you for this. I, too, am a holder of both passports. My illness is something invisible but easily identified - I've had two heart transplants. But the belief is that I should be fine now, right? People don't see the side effects from the powerful anti-rejection drugs that leave me nauseated, fatigued, and incapacitated for hours every day. And side effects don't qualify as a disability. In a world where anyone can become disabled in the blink of an eye, most people either give little thought to the disabled or actively disdain us.
“And side effects don't qualify as a disability. “
That’s just ridiculous and outrageous at the same time. What do they think is the alternative; rummage around in the scrap parts barrel and put the old one back in?
My dad had a transplant and the never ending drugs affected his life so profoundly that he was an entirely different person.
These insurance decisions are made financially and politically and that’s where the fight has to be brought. If only there were any excess energy to give it.
Disdain is too polite a word for the reality of millions of Americans.
I'm sorry your father was so badly impacted by his medications. They are hard sometimes. I have learned how to live my life around the side effects. I have to take them twice a day, so I take them at lunch and before bed. That way I can sleep through one half of the sick feeling. This gives me the full morning to do whatever I need - appointments, errands, writing. I spend the afternoon on the couch and get up in time to do a little housework and make dinner. After dinner, I can go out and socialize or hang out with my husband. But I'm unable to work a full-time job. If I lose my disability benefits because my heart is in good shape, then I'm going to be scrambling to find a job with health insurance and spend the entirety of my good hours working so I can have insurance to pay for the pills that make me sick. If only we had universal health care.
As someone who has a chronic illness which took 17 years to diagnose, and by a Dr who told me I probably didn't have it, this all rang so true. I felt seen and what a beautiful central idea of love and belief ❤️
This made me cry (in a good, cathartic, "feeling seen" way!) after a full day of trying to find a doctor to see me before February 2025. "Just because we can’t find something...doesn’t mean nothing is wrong" is something I've heard only a handful of times, but it makes such a difference in my perseverance to keep searching for what is wrong instead of giving up. Thank you for this beautiful piece.
Immediately shared this with my 'chronic collective' which despite the nickname, none of us are interested in cannabis strains. All of us <are> still seeking that second passport. I downloaded this app a few minutes ago via my mother-in-law's urging and your story was the very first thing I've read so far. I was so moved and felt so seen, it felt like a sign. A sign saying that even though i can't afford the most recent necessary mri right now and even though I am still trading passive aggressive notes with my gp's nursing staff daily just to get someone to believe that my negative ANA test does not mean that I'm ok, and even though it feels like no one will listen to me... the universe does listen and it creates pathways and guides me every single day towards human connections and understanding. So yes, this is an extremely pertinent and lovely way to start my day and my new substack curative. ❤️ thank you.
Thank you for sharing your story. It will resonate with many readers. I. too have illnesses people can't see and it's exhausting to explain. Congratulations on getting your doctorate degree. Live life not perfectly but joyfully!!
Beautiful and heart wrenching; You bring the reader so close. Bravo on this piece, and your perseverance searching for answers and pushing forward with your own goals.
I so needed to read what you wrote so honestly and provocatively as I relate to the whole "medical anomaly" business of being told "You're fine" just because certain limited testing reads "negative" for whichever illness, rather than being reassured respectfully that it only means all the tests are inconclusive versus definitive for not having illness. My ongoing fatigue and low stamina also are largely invisible just because when folks see me walking, it is because I am willing myself to do so, and most of what I feel they cannot know because they don't see how often I must rest or nap in order to choose one thing I can do which only takes a short amount of time to do, so that I can then stop and rest or nap, so they assume that I am active mostly continually all day or if I do mention fatigue, I am asked why as though I am just suddenly temporarily ill, rather than that most of the time I simply pretend to be other than how I actually feel and am functioning...so many many thanks for my not feeling as alone as before I read your essay and for thus validating so many of us hidden with ailments not-yet diagnosed, or misdiagnosed, not to mention drug side effects of those drugs supposed to be helping us...
This writing is a gift. In it I find reflected my own twelve year journey to some kind of coherent diagnosis. I am so grateful for the words to articulate some of my experiences. I finally hold two passports, but it feels like I held none forever.
Illness is so intensely private, and especially for a culture which prizes the firmness and freshness of youth, feeling your young adulthood trickle away to middle age in the wasted space of that "stateless" place - the not quite sick enough to be believed and not quite well enough to flourish place ... It's been an exercise in even the well-meaning people who love me wearying. It's hard to hold onto yourself and it's devastating to make the rounds of expensive Stanford specialists who tell you to stop eating so much red meat and do some yoga... And you numbly take your vegetarian-since-childhood self home to lie down again and figure out what you have the energy to do next...
And then you read something that reminds you that you're not the only one.
A gift.
A very moving piece. Thanks for writing it. Despite living an active, full life spent mostly in the military, I've held both passports since my 20s. My problems were always easy to identify, however. They were right there on the X-Rays. But the part of your piece that really resonated with me was envisioning a world that doesn't exist yet. We're so busy leaning into life as disposable, building insects that we can't see that we could make life better for everyone. If we could get rid of the scarcity mindset and stop believing the least generous interpretation of events and people, we could all live in a slower, softer world. I'd say a more humane world, but let's be honest. We are who we are. The "human" part of humane makes it a misnomer. I still have hope, though. A gift from my daughter.
This is an amazing piece. As a physician, I can empathize with the inability to provide a diagnosis when something is clearly wrong. You have exquisitely described how that feels to the person on the receiving end of that information. Congratulations on you PhD. You clearly have grit and sound like you “rage” against your fatigue by accomplishing things even if from your bed with your cats. Bravo.
Thank you for this. I, too, am a holder of both passports. My illness is something invisible but easily identified - I've had two heart transplants. But the belief is that I should be fine now, right? People don't see the side effects from the powerful anti-rejection drugs that leave me nauseated, fatigued, and incapacitated for hours every day. And side effects don't qualify as a disability. In a world where anyone can become disabled in the blink of an eye, most people either give little thought to the disabled or actively disdain us.
“And side effects don't qualify as a disability. “
That’s just ridiculous and outrageous at the same time. What do they think is the alternative; rummage around in the scrap parts barrel and put the old one back in?
My dad had a transplant and the never ending drugs affected his life so profoundly that he was an entirely different person.
These insurance decisions are made financially and politically and that’s where the fight has to be brought. If only there were any excess energy to give it.
Disdain is too polite a word for the reality of millions of Americans.
I believe you.
I'm sorry your father was so badly impacted by his medications. They are hard sometimes. I have learned how to live my life around the side effects. I have to take them twice a day, so I take them at lunch and before bed. That way I can sleep through one half of the sick feeling. This gives me the full morning to do whatever I need - appointments, errands, writing. I spend the afternoon on the couch and get up in time to do a little housework and make dinner. After dinner, I can go out and socialize or hang out with my husband. But I'm unable to work a full-time job. If I lose my disability benefits because my heart is in good shape, then I'm going to be scrambling to find a job with health insurance and spend the entirety of my good hours working so I can have insurance to pay for the pills that make me sick. If only we had universal health care.
As someone who has a chronic illness which took 17 years to diagnose, and by a Dr who told me I probably didn't have it, this all rang so true. I felt seen and what a beautiful central idea of love and belief ❤️
This made me cry (in a good, cathartic, "feeling seen" way!) after a full day of trying to find a doctor to see me before February 2025. "Just because we can’t find something...doesn’t mean nothing is wrong" is something I've heard only a handful of times, but it makes such a difference in my perseverance to keep searching for what is wrong instead of giving up. Thank you for this beautiful piece.
Beautiful. Thank you for sharing.
Immediately shared this with my 'chronic collective' which despite the nickname, none of us are interested in cannabis strains. All of us <are> still seeking that second passport. I downloaded this app a few minutes ago via my mother-in-law's urging and your story was the very first thing I've read so far. I was so moved and felt so seen, it felt like a sign. A sign saying that even though i can't afford the most recent necessary mri right now and even though I am still trading passive aggressive notes with my gp's nursing staff daily just to get someone to believe that my negative ANA test does not mean that I'm ok, and even though it feels like no one will listen to me... the universe does listen and it creates pathways and guides me every single day towards human connections and understanding. So yes, this is an extremely pertinent and lovely way to start my day and my new substack curative. ❤️ thank you.
Thank you. The line of inquiry was so well sustained through this story of fatigue. Bravo.
Very well written! Thank you for sharing your story.
I believe you, Rachel. I also agree that love is the answer. Learning to love ourselves through it all is so important.
I'm sharing this with a couple writing buddies who have chronic fatigue syndrome.
Thank you for sharing your story. It will resonate with many readers. I. too have illnesses people can't see and it's exhausting to explain. Congratulations on getting your doctorate degree. Live life not perfectly but joyfully!!
Damn. Yes. Thank you. An excellent piece of writing that I know I'll randomly recall bits of far, far into the future.
Beautiful and heart wrenching; You bring the reader so close. Bravo on this piece, and your perseverance searching for answers and pushing forward with your own goals.
What a beautiful essay. I very much admire your strength and your ability to think so clearly about your illness and the struggle to be believed.
I so needed to read what you wrote so honestly and provocatively as I relate to the whole "medical anomaly" business of being told "You're fine" just because certain limited testing reads "negative" for whichever illness, rather than being reassured respectfully that it only means all the tests are inconclusive versus definitive for not having illness. My ongoing fatigue and low stamina also are largely invisible just because when folks see me walking, it is because I am willing myself to do so, and most of what I feel they cannot know because they don't see how often I must rest or nap in order to choose one thing I can do which only takes a short amount of time to do, so that I can then stop and rest or nap, so they assume that I am active mostly continually all day or if I do mention fatigue, I am asked why as though I am just suddenly temporarily ill, rather than that most of the time I simply pretend to be other than how I actually feel and am functioning...so many many thanks for my not feeling as alone as before I read your essay and for thus validating so many of us hidden with ailments not-yet diagnosed, or misdiagnosed, not to mention drug side effects of those drugs supposed to be helping us...