I read this all the way through, including the message you sent that got no reply, and the dress you wiped your tears with. I do not think there is a person hidden underneath the illness, waiting to be recovered separately from it. You are right here, whole, in every line of this, sick too, but not instead.
The thing you have named that I will carry is that some illnesses arrive with a script people already know how to follow, and others leave the person spending their first and scarcest energy just becoming believable before they can be helped at all. That is not a competition between diseases. It is that some suffering comes with a bridge already built between private pain and public response, and some makes you build the bridge yourself while already exhausted by the crossing.
You asked to be seen rather than pitied. So, plainly: I see the participation you are grieving, not just the health. And your four-year-old, “I promise I’ll tell you all about it when we get back,” already sees you completely. That is not nothing. It may be the truest thing in the whole piece.
"So they reframe: lazy, dramatic, difficult, attention-seeking, a hypochondriac, somehow responsible for their own suffering." I am all too familiar with this dynamic which you spelled out so clearly. I have written about it extensively in my own Substack.
Dr. David Younger just wrote an excellent post about the hierarchy of illness/ disability and how it perpetuates ableism.
I have ME and have also had cancer (twice). Yes, people respond differently to those two diseases. But it’s not that simple. There are people with cancer who are not surrounded by supportive people. When I had cancer, not everyone in my life supported me the way I needed. I am fortunate that everyone in my life tried, even if they missed the mark. My hope for you is that you are surrounded by people, like your daughter, who try.
Thank you for this. I think you're absolutely right that reality is more nuanced than the binary I drew.
The essay isn't really about cancer so much as legitimacy—the social structures that spring up around some illnesses and not others.
But those structures are never distributed perfectly, and there are certainly people with cancer who are unsupported, disbelieved, or left to carry far more than they should.
II appreciate you sharing your perspective, especially as someone who has lived through both experiences. The world is almost always more gray than black and white, and your comment is an important reminder of that.
Thank you. It means a lot that you read so carefully and offered your perspective.
I read this all the way through, including the message you sent that got no reply, and the dress you wiped your tears with. I do not think there is a person hidden underneath the illness, waiting to be recovered separately from it. You are right here, whole, in every line of this, sick too, but not instead.
The thing you have named that I will carry is that some illnesses arrive with a script people already know how to follow, and others leave the person spending their first and scarcest energy just becoming believable before they can be helped at all. That is not a competition between diseases. It is that some suffering comes with a bridge already built between private pain and public response, and some makes you build the bridge yourself while already exhausted by the crossing.
You asked to be seen rather than pitied. So, plainly: I see the participation you are grieving, not just the health. And your four-year-old, “I promise I’ll tell you all about it when we get back,” already sees you completely. That is not nothing. It may be the truest thing in the whole piece.
I’d be lying if I said didn’t tear up reading this comment. Thank you. For seeing and for saying so.
Wonderfully written as always 🫶
"So they reframe: lazy, dramatic, difficult, attention-seeking, a hypochondriac, somehow responsible for their own suffering." I am all too familiar with this dynamic which you spelled out so clearly. I have written about it extensively in my own Substack.
Dr. David Younger just wrote an excellent post about the hierarchy of illness/ disability and how it perpetuates ableism.
I have ME and have also had cancer (twice). Yes, people respond differently to those two diseases. But it’s not that simple. There are people with cancer who are not surrounded by supportive people. When I had cancer, not everyone in my life supported me the way I needed. I am fortunate that everyone in my life tried, even if they missed the mark. My hope for you is that you are surrounded by people, like your daughter, who try.
Thank you for this. I think you're absolutely right that reality is more nuanced than the binary I drew.
The essay isn't really about cancer so much as legitimacy—the social structures that spring up around some illnesses and not others.
But those structures are never distributed perfectly, and there are certainly people with cancer who are unsupported, disbelieved, or left to carry far more than they should.
II appreciate you sharing your perspective, especially as someone who has lived through both experiences. The world is almost always more gray than black and white, and your comment is an important reminder of that.
Thank you. It means a lot that you read so carefully and offered your perspective.