You know, for as much of my life as I’ve devoted to health activism and being open about invisible illness, I am still nowhere near where I want to be as an activist for myself. I’m really happy that I’ve helped so many people stand up and speak out for themselves and that I’ve brought a little bit of light to issues that are still very much in the dark. But every now and then I can’t help but let my own shortcomings get me down.
I thought I might feel a bit better if I got some of this off my chest, so I’m coming clean with you. These are my confessions. As always with “downer” subject matter, I’ll keep the mood light with gifs and memes.
Confession #1: I am still not open about my health with my parents.
Yes, my own flesh and blood. The people who bestowed life upon me. The people who changed my diapers and bandaged my bloody wounds and have otherwise “seen it all.” I would say they are impossible to talk to, but that’s misplacing blame. When I’m with them I sneak pills, hide pain, and always report that I’m on the up and up no matter how much of a rollercoaster I’m really on with my illness. I have good days and bad days but if anyone asks it’s always a good day. Always. I’m fine, it’s no big deal.
Confession #2: I suck at talking to my doctor.
I always go in with such noble intentions. I’m one of those freaky people who find human interaction exhausting and terrifying. I know this. So I make a game plan. I write down the questions I have. I keep track of symptoms. I practice the conversations. Then I get in there and suddenly feel so painfully stupid for having questions that there’s just no way I can voice them. One solution I thought of was bringing my husband and instructing him to bring up anything I don’t. Then when he starts to talk I give him this look.
Confession #3: No matter how wrong I feel that it is that men think “women’s health” is gross, I am still totally mortified when a guy asks about endometriosis.
So first I try to be vague, then I try to make it no big deal and escape the conversation as fast as possible.
It’s Road to El Dorado night apparently, just enjoy it.
Confession #4: I’m batsh*t insane.
I don’t really know how else to sum this one up. But I do a lot of “OMG I hate taking medicine it makes me feel so much better but then am I abusing it or do I just feel better because I’m not hurting? I’m a drug addict and I’m going to die ahhhhh” and “I will NEVER use illness as an excuse! I can’t do anything that would illegitimize invisible illness more than it is. But I don’t really want to work out today. Am I using illness as an excuse? BETTER GO EXERCISE AND HATE LIFE. Or spend the day in an inconclusive philosophical self-argument.”
Confession #5: I just really hope you’re all doing as I say and not as I do.
Well, now you know. I’m not perfect, I’m still working on me, too. Don’t go thinking you can’t advocate for yourself or that it’s easy. I’m not where I want to be, but I’m not where I was, and that is huge.
Anything you’d like to get off your chest, readers?