Confessions of a Health Activism Blogger

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?

12 thoughts on “Confessions of a Health Activism Blogger

  1. I totally hear you. I think a lot of people find it easier to have compassion for others than for themselves, and it’s definitely true for me. I often blame myself for a lot of the things that happened in the past, when I know that if they’d happened to someone else, I’d be right there telling the person it wasn’t their fault.

    1. Wonderful point! Someone on twitter told me “demand the same care for yourself than you would demand for your child” in reference to being timid when talking to doctors, but I think it’s a great motto for anything. I’m not even a parent but it’s about helping those who need it, those who are weaker or depend on you – and who depends on you more than yourself? 🙂

  2. I completely relate to #4 – who is this psycho person that is inside me! I really know I’ve done it when Guy does his thing where he keeps going on normally, but surreptitiously glances at me every now and then, clearly thinking “is she crying? is she about to?”
    And yes #5, me too – I put up blog posts after I’ve really thought things through and have worked out my feelings and what I need to do in the future. There are so many days when I wilfully do the wrong things (I ate chocolate today) or just wander abut clueless as to the consequences (I decided that potting up the new plants all by myself was an excellent idea. Three days in bed later, I decided that I’m an idiot and never learn!)

    1. Glad I’m in good company. 🙂 We can really be our own worst enemy. It’s important to realize that and learn so that we can share with others and do better next time. (plus, I’m sure the chocolate was worth breaking a few rules for. 😛 )

  3. The guy’s probably asking about endometriosis in case it’s contagious or interferes with sex!
    I was a nurse and long time and still had trouble talking to my doctors after I got so sick. I had some really weird symptoms that made no sense to me. If I thought they were weird, what was the doctor going to think?

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