Oof yes. It was so hard to read this (because I still lack some of the better friendships described in the piece), but so important. I also think people miss out on the incredible value disabled friends brings. You touch on that, and I appreciate it. Disabled people often have the least capacity, but show up in the most profound ways and carry with them the wisdom of an oracle (props to Alice Wong), if only non-disabled people would bother to listen.
Truth! My disabled friends are my favorite humans I’ve ever met, for these reasons. Their capacities physically may be less but it deepens their emotional capacities a hundred fold! Sending you lots of love. It’s hard to feel lonely and I feel that a lot these days too.
I felt quite like a bobble-head nodding along so much, but I love how beautifully you wove this together. Thank you for bringing me into this dialogue. I'll hold it close to my heart next time I'm feeling the all-consuming guilt of canceling a plan because my body had other plans.
This is such a thoughtful and bittersweet post. I read it through the blur of tears (tears of recognition as well as tears of grief). This is such an important topic. Thank you for shining a light on it so beautifully.
It really hurts when you stop being invited to things.
I don't care that I can't go rock climbing, but maybe I just want to come hang out on ground level with y'all. I've done this multiple times.
No, I have no interest or ability in attending an all day outdoor music festival. But let me know that the band lineup made you think of me. Then you can send me a picture day of, and our connection is maintained. Our relationship still exists.
This cuts right to the heart. I now see the physical logistics of friendship through an environmental lens. The modern world is built for relentless, fast-moving mobility with its busy streets, long lines, and loud venues. When a body or mind simply cannot endure that outside chaos, the built environment itself acts as a barrier, trapping you while everyone else moves on.
True friendship, then, becomes an act of intentional environmental design. It means a friend choosing to step out of that fast-paced public machine and willingly crossing the threshold into your quiet sanctuary. To truly recognize you in that space means willingly stepping into an entirely different timeline. A softer, more intentional one. And it's a beautiful, necessary demand for both people. Thank you for this essential piece.
The isolation that comes with having a disability is something that continues to cause me grief on a daily basis.
It is painful to hear people they care and want to spend time with you, but who make no effort to stay in touch, let alone come and visit me, knowing that I can't leave my house without great amounts of pain and struggle right now.
This is so beautifully written and honestly made me really emotional 🥺
As a soon-to-be doctor, and as a human being in general, I’m actively learning how to make people feel included and, more importantly, how to listen to what people with disabilities have to say. Every disabled person’s experience is unique, and there are so many things that able-bodied people can overlook or be unaware of without even realizing it.
One thing I’m working on is moving away from feeling sorry for people because of experiences they may miss out on, and instead thinking about how we can make experiences more accessible and accommodating so everyone can participate. It has always hurt to see disabled people looked down upon or excluded by society, and this post really opened my eyes to the small but meaningful ways we can show up for and include our disabled friends <3
Thank you so much for your kind words, Neha, and for the amazing work you’re doing to be inclusive and thoughtful. I’m so grateful people with big hearts and open minds like you are becoming doctors! That’s what the world needs more of! Sending you lots of love.
My daughter probably does this best. She will actually go to a place in advance to see how loud it is and to see what the lighting is like before we even make plans to go. If either of these are bad, she knows I will not enjoy it so we don’t do it.
As a disabled person myself, I face with rejection and ghosting. I did reveal my disability to some friends, but unfortunately some of them changed the way they behave with me, while others ghosted out of the blue. Many people leave because you show your vulnerability. They think that you might become a burden, so they don't want to "invest". It's really hard to find friends or people who wouldn't be afraid of disability
Reading this felt like a healing journey in itself. The warrior quality of the human spirit shines alongside the struggle, despair and vulnerability and it's rendered beautiful. I am so grateful to my two partners (one disabled himself, both give me lots of support according to their capacities) and my fellow disabled friends. The non disabled friends... they are still "getting" it, and partly that's because I've masked so hard - the CFS as well as the ND stuff.
It's all coming out now, and saying no or stepping back from more social gatherings is actually feeling mostly like a long overdue relief because I was doing a lot of it just to feel I belonged. I'm now discovering how to build community and nurture friendship in ways that work for my body. Those friends who will visit me at home are priceless!
I can totally relate to this journey from masking to having to let that go. Changing the way I socialize to fit what I need has been such a game changer too! Yes to home hangs. They are everything to me ❤️🩹🫂
I don't even know what it looks like to be friends with me anymore. I don't have any fluctuation in my symptoms anymore, no matter what every day it hurts to talk for longer than a minute. It hurts to wear any clothes at all I can't stay upright for longer than five minutes, and it hurts to move at all, although I will endure that pain for a text or some writing but it quickly becomes unbearable, pain spiking until the next day. all I can do is make peace with it and be grateful that my mom takes care of me.
This is really the most complicated part, redefining what friendship can mean in a disabled body. I wish I had more answers but instead you’ve left me to ponder more! Sending you lots of love ❤️🩹🫂
"Allow me the dignity of making my own decisions” — that line stayed with me.
Living with limitation doesn’t remove agency. It changes how often we have to weigh the cost.
The most meaningful friendships I’ve known are the ones that keep the invitation open, trust the answer, and don’t disappear in the space between.
Thank you so much Mary!
Love this, too.
Oof yes. It was so hard to read this (because I still lack some of the better friendships described in the piece), but so important. I also think people miss out on the incredible value disabled friends brings. You touch on that, and I appreciate it. Disabled people often have the least capacity, but show up in the most profound ways and carry with them the wisdom of an oracle (props to Alice Wong), if only non-disabled people would bother to listen.
Truth! My disabled friends are my favorite humans I’ve ever met, for these reasons. Their capacities physically may be less but it deepens their emotional capacities a hundred fold! Sending you lots of love. It’s hard to feel lonely and I feel that a lot these days too.
I completely agree! Sending love right back to you. I’m so sorry for the loneliness you’ve been experiencing. It is sooooo hard.
wow, this feels like a long hug for the grief that comes with being chronically ill
Sending you so much love, lio!
I felt quite like a bobble-head nodding along so much, but I love how beautifully you wove this together. Thank you for bringing me into this dialogue. I'll hold it close to my heart next time I'm feeling the all-consuming guilt of canceling a plan because my body had other plans.
Thank you Emily! So honored to have your thoughts on this topic. Sending you big hugs 🥰🫂
This is such a thoughtful and bittersweet post. I read it through the blur of tears (tears of recognition as well as tears of grief). This is such an important topic. Thank you for shining a light on it so beautifully.
Sending you so much love, Kai! Thank you for taking the time and care with this one.
It really hurts when you stop being invited to things.
I don't care that I can't go rock climbing, but maybe I just want to come hang out on ground level with y'all. I've done this multiple times.
No, I have no interest or ability in attending an all day outdoor music festival. But let me know that the band lineup made you think of me. Then you can send me a picture day of, and our connection is maintained. Our relationship still exists.
One hundred percent, Ju! There are so many ways to stay connected these days. These ideas are beautiful ❤️🩹🫂
This cuts right to the heart. I now see the physical logistics of friendship through an environmental lens. The modern world is built for relentless, fast-moving mobility with its busy streets, long lines, and loud venues. When a body or mind simply cannot endure that outside chaos, the built environment itself acts as a barrier, trapping you while everyone else moves on.
True friendship, then, becomes an act of intentional environmental design. It means a friend choosing to step out of that fast-paced public machine and willingly crossing the threshold into your quiet sanctuary. To truly recognize you in that space means willingly stepping into an entirely different timeline. A softer, more intentional one. And it's a beautiful, necessary demand for both people. Thank you for this essential piece.
This is a beautiful way of looking at it, Alexandra 🫂❤️🩹 thank you for engaging so deeply with this piece.
Thank you for continuously making the invisible visible 💚.
For the most part, the disabled people I know since childhood have always been more accepting if I accept them.
The isolation that comes with having a disability is something that continues to cause me grief on a daily basis.
It is painful to hear people they care and want to spend time with you, but who make no effort to stay in touch, let alone come and visit me, knowing that I can't leave my house without great amounts of pain and struggle right now.
I feel this too right now, Lulu ❤️ Folks have been refusing to visit me too and it’s really hard to feel so alone.
This is so beautifully written and honestly made me really emotional 🥺
As a soon-to-be doctor, and as a human being in general, I’m actively learning how to make people feel included and, more importantly, how to listen to what people with disabilities have to say. Every disabled person’s experience is unique, and there are so many things that able-bodied people can overlook or be unaware of without even realizing it.
One thing I’m working on is moving away from feeling sorry for people because of experiences they may miss out on, and instead thinking about how we can make experiences more accessible and accommodating so everyone can participate. It has always hurt to see disabled people looked down upon or excluded by society, and this post really opened my eyes to the small but meaningful ways we can show up for and include our disabled friends <3
Thank you for sharing this 💙
Thank you so much for your kind words, Neha, and for the amazing work you’re doing to be inclusive and thoughtful. I’m so grateful people with big hearts and open minds like you are becoming doctors! That’s what the world needs more of! Sending you lots of love.
My daughter probably does this best. She will actually go to a place in advance to see how loud it is and to see what the lighting is like before we even make plans to go. If either of these are bad, she knows I will not enjoy it so we don’t do it.
Wow that’s so sweet and compassionate! What an amazing daughter ❤️🩹
As a disabled person myself, I face with rejection and ghosting. I did reveal my disability to some friends, but unfortunately some of them changed the way they behave with me, while others ghosted out of the blue. Many people leave because you show your vulnerability. They think that you might become a burden, so they don't want to "invest". It's really hard to find friends or people who wouldn't be afraid of disability
I relate to this so much, Justina. It’s very hard to find friends who will stay and face their fears together ❤️🩹🫂
Reading this felt like a healing journey in itself. The warrior quality of the human spirit shines alongside the struggle, despair and vulnerability and it's rendered beautiful. I am so grateful to my two partners (one disabled himself, both give me lots of support according to their capacities) and my fellow disabled friends. The non disabled friends... they are still "getting" it, and partly that's because I've masked so hard - the CFS as well as the ND stuff.
It's all coming out now, and saying no or stepping back from more social gatherings is actually feeling mostly like a long overdue relief because I was doing a lot of it just to feel I belonged. I'm now discovering how to build community and nurture friendship in ways that work for my body. Those friends who will visit me at home are priceless!
I can totally relate to this journey from masking to having to let that go. Changing the way I socialize to fit what I need has been such a game changer too! Yes to home hangs. They are everything to me ❤️🩹🫂
this one 😭😭😭 your writing has been helpful for a long while, but oof this one just hit 😭😭😭 I do hope I can find some friends soon 🥹🥹🥹
Love you, Espy! Me too, more friends please universe 🥹
Oof, so relatable..
"Don’t assume my limitations." -- Omg, hell hath no fury!!!!
Thank you Caroline! ❤️🩹🫂
I don't even know what it looks like to be friends with me anymore. I don't have any fluctuation in my symptoms anymore, no matter what every day it hurts to talk for longer than a minute. It hurts to wear any clothes at all I can't stay upright for longer than five minutes, and it hurts to move at all, although I will endure that pain for a text or some writing but it quickly becomes unbearable, pain spiking until the next day. all I can do is make peace with it and be grateful that my mom takes care of me.
This is really the most complicated part, redefining what friendship can mean in a disabled body. I wish I had more answers but instead you’ve left me to ponder more! Sending you lots of love ❤️🩹🫂