Hey friends! Here's what is on the agenda this week:

Have you ever heard anything like the following?

"It could be worse. You could have something that could kill you."

"Be grateful your legs don't look like mine." (a later stage to an earlier stage)

They come from people who are trying to help and cannot think of anything to say, which is very human.

What those statements have in common is that each one asks you to feel better by comparison. Compare your condition to a fatal one. Compare your body to someone's taste in bodies. Compare your legs to worse legs. You’re supposed to find relief in knowing that others have it worse.

The trouble is that comparison is not actually comforting. Your legs hurt today. The stairs are harder than they were last year. You canceled something you wanted to go to. None of that changes when you learn that cancer exists or that stage four looks different from stage two.

If you're still upset after being reminded that it could be worse, then the problem has become your attitude.

I see the comparison thing move in both directions in our community. A woman at stage one posts about the pain she's in and someone further along tells her to be grateful. A woman at stage four posts about losing her mobility and someone tells her at least it isn't terminal. Both women get the message that their suffering hasn't earned the right to be mentioned.

If you're the one struggling, I want you to know that you are allowed to be upset about lipedema even though other diseases exist. That's not a competition you entered. Your body hurts, and hurting is a sufficient reason to be upset about hurting. You don't have to run it past a committee.

And if you're the one who wants to help someone, the useful move is something like, "I'm sorry, that sounds hard."; "I don't know what to say, but I'm here."; "Do you want to talk about it or do you want a distraction?" Any of these will do more than a comparison.

If you've handed someone a "could be worse" at some point, you were doing your best. Most of us learned those scripts because they were handed to us. What I'd like is for us to notice when we're reaching for one, and to consider that the person in front of us might not need their situation reframed. They might just need someone to agree that it's hard.

I went looking for books this week.

I haven't read any of these. I'll report back as I get through them. If you've read any of these already, I want to hear about it, because I'm choosing where to start.

_{A quick word about where these links go. Bookshop.org exists to keep independent bookstores alive. Every purchase sends money back to indie bookstores, either to a specific store you choose (I chose The Book Matters, an independent bookstore near me) or into a pool that gets divided up among participating stores twice a year. I earn a small commission when you buy through my links, at no extra cost to you, and an equal amount goes to the bookstore pool on top of that.}

How to Be Sick, Toni Bernhard. She was a law professor who got sick and did not get better and had to give up the career and the life she'd built. What made me put it first is that it deals with envy, grief, and the loss of who you used to be, which is territory most books about illness steer clear of. Reviewers keep saying the same thing about it: there are no quick fixes and no forced brightness. The framework is Buddhist, so if that's not your thing, know that going in.

Doing Harm, Maya Dusenbery. This one is about how women get dismissed and misdiagnosed, and specifically about how the phrase medically unexplained symptoms functions as cover when a doctor can't figure something out and decides the problem must be psychological. I expect this to make me angry rather than calm.

The Body Is Not an Apology, Sonya Renee Taylor. Written for people who've felt their body was too much or not enough, and pointed specifically at readers who don't see themselves in mainstream wellness conversations. My one hesitation, and I'll say it because I know this group: the body positivity world sometimes turns on women who want to change their bodies at all, and plenty of you are considering surgery or recovering from it. I don't know yet whether this book does that. I'll tell you when I know.

You Just Need to Lose Weight, Aubrey Gordon. The title is the sentence many of us have heard in an exam room. It's a book about the assumptions underneath that sentence and where they came from.

When Things Fall Apart, Pema Chödrön. This one is about sitting with grief and fear and uncertainty instead of resolving them. It has short chapters, which makes it a great option when your brain fog is keeping you from wanting to get too deep in a book.

I’d love to know any recommendations you have.

Thanks for reading.

Hit reply and tell me one thing you'd like to see in future issues. A topic, a question, a resource you wish more women knew about. Anything.

I read every reply.

See you next week. 💜

April

P.S.

If you’d like to share some of your lipedema journey in a future Lippy Notes, let me know by clicking reply.