Asking for help is being in community! I say this as a fellow disabled person who really struggles with this skill, but it is a skill worth tending to! I really appreciated this list as a whole, but the last lesson is my personal favorite.
I love and relate to so much about this, Heather. I too have gotten over caring about whether I disappoint people. No one will put my health first if I don’t do it for myself. I have recently told a slew of friends that I’m back to not patronizing indoor restaurants as the summer cases tick up. And yet, I’m also super heat intolerant and so most days, I won’t meet folks at an outdoor restaurant either. The old me used to feel like if I gave someone two or more reasons why I couldn’t engage, it would seem as though I was lying or coming up with excuses. Now I live with the knowledge that I know I’m not making excuses and that I don’t care if they think I am. I will never not safeguard my health again.
Oh! Congrats on the new gig with The Sick Times! Miles and Betsy are the bomb. And now they have you ❤️🔥
Fabulous writing as always. You have such a skill for putting into words in such a relatable way, what many of us feel and experience.
PS - I gasped out loud when you said the 2 initial docs who gaslit you/didn’t believe you had LC, now have LC and have had to stop working. Whew. I have complicated feelings about that! (Like, karma got them, but also, I don’t want even my enemies to experience this. Sigh)
Real friends are worth everything. Yes!! I've had health problems for over 2 years and I'm sooooo grateful for my friends who continue to visit, as I can't go to them. And a couple of my friends set a timer so they won't stay too long as we inevitably end up losing track of time chatting away. So I get to see my loved ones, top up my love tank, and not crash too badly afterwards.
Absolutely agree with the rest of this list too, spot on as usual!
First, thanks for this essay. I heard a speaker last fall talk about how disabled people have actually made life easier for everyone because they have insisted on accessibility. As an old lady, ramps and rails and grab bars are essential to my life. Cool walking canes mean that I don't feel quite so ancient when I need one. And so on. But second, I want you and your long COVID compadres to monetize and prove the stupidity of mask bans by making cool clear masks (called something besides "mask"). Protective, cute, colorful borders and designs (and cats), but see-through. Clear masks already exist, so make 'em yours. Somebody in your community has already thought of it. Time to start something!
Asking for help is being in community! I say this as a fellow disabled person who really struggles with this skill, but it is a skill worth tending to! I really appreciated this list as a whole, but the last lesson is my personal favorite.
I love and relate to so much about this, Heather. I too have gotten over caring about whether I disappoint people. No one will put my health first if I don’t do it for myself. I have recently told a slew of friends that I’m back to not patronizing indoor restaurants as the summer cases tick up. And yet, I’m also super heat intolerant and so most days, I won’t meet folks at an outdoor restaurant either. The old me used to feel like if I gave someone two or more reasons why I couldn’t engage, it would seem as though I was lying or coming up with excuses. Now I live with the knowledge that I know I’m not making excuses and that I don’t care if they think I am. I will never not safeguard my health again.
Oh! Congrats on the new gig with The Sick Times! Miles and Betsy are the bomb. And now they have you ❤️🔥
Fabulous writing as always. You have such a skill for putting into words in such a relatable way, what many of us feel and experience.
PS - I gasped out loud when you said the 2 initial docs who gaslit you/didn’t believe you had LC, now have LC and have had to stop working. Whew. I have complicated feelings about that! (Like, karma got them, but also, I don’t want even my enemies to experience this. Sigh)
I relate to this so much as someone who has MECFS and is disabled. I deeply appreciate your honesty.
Real friends are worth everything. Yes!! I've had health problems for over 2 years and I'm sooooo grateful for my friends who continue to visit, as I can't go to them. And a couple of my friends set a timer so they won't stay too long as we inevitably end up losing track of time chatting away. So I get to see my loved ones, top up my love tank, and not crash too badly afterwards.
Absolutely agree with the rest of this list too, spot on as usual!
love love love you friend 🖤😭
First, thanks for this essay. I heard a speaker last fall talk about how disabled people have actually made life easier for everyone because they have insisted on accessibility. As an old lady, ramps and rails and grab bars are essential to my life. Cool walking canes mean that I don't feel quite so ancient when I need one. And so on. But second, I want you and your long COVID compadres to monetize and prove the stupidity of mask bans by making cool clear masks (called something besides "mask"). Protective, cute, colorful borders and designs (and cats), but see-through. Clear masks already exist, so make 'em yours. Somebody in your community has already thought of it. Time to start something!