Chronic Rants

When I started this blog, it was so I could have a place to rant about the frustrations of having chronic illnesses. Over time, it’s morphed a bit, and I’ve covered many chronic illness-related topics from many perspectives. But today it’s time for a good old fashioned rant again.

I was in what I thought was a safe space. I thought it was safe, so I let down my guard. I’m so used to keeping my guard up that I completely forget about it, until I let it down and something proves that I should have kept it up.

Today’s incident was unexpected. I was in a room of people who care about social justice issues. The afternoon was spent talking about what it means to be in an oppressed group, and how to be an ally to an oppressed group. Most of the talk was about racism and sexism, but there was a bit of talk about homophobia, biphobia, and transphobia. I also brought up ableism. Everyone was kind, respectful, and interested in learning. I was asked some great questions by someone who just wanted to understand a bit more about what the disabled community is dealing with. I connected with another person with chronic illness. It was a fantastic afternoon. I had missed most of the event, but at least I’d made it for the end and was feeling more or less ok.

Then it was time for a closing exercise. It involved walking around the room, which I could have done a few hours earlier, but not at that point. At that point I needed to sit. And that’s when I became invisible. Most people avoided looking at me. A few looked, and then looked quickly away. They pretended I wasn’t there. It was horrible. I thought about leaving, but that didn’t feel like the right thing to do. I thought about getting up and participating, but I knew I couldn’t manage it. So I stayed seated. And then later, I cried.

Thankfully there was a friend there, and as people left, I pulled her aside, told her what happened, and cried. I don’t cry often, especially in public. But I was so upset! For once I had let my guard down, and look what happened! No one was mean. No one said anything insensitive. But they acted like I was invisible, and I just couldn’t handle that. Not like that. Not today.

I’m still hurting. I can’t seem to get it off my mind. Plus, I’m dealing with the physical effects: the adrenaline surge left me shaky at first, but I calmed down and ate, and that helped. Still, for someone with adrenal insufficiency, that’s not good. And of course, crying is tiring, even when it’s a short cry. So now I’m drained, but I know I need to wake up early for a doctor appointment tomorrow. Damn!

And I’m just so pissed, because I was having a really nice day! I had wanted to attend this thing for weeks, and I wasn’t sure I’d be able to make it. Even this morning I had my doubts, but I made it and I’d had a really nice time! It was so wonderful until the end. And that just ruined the whole thing. I’m trying to hold onto that good feeling I’d had, but I just can’t seem to do it.

I put up with this kind of bullshit all the time. That’s why I’m so used to keeping my guard up. It feels like I deal with some sort of bullshit every time I leave the house, but this once, for just a short time, I thought I was safe. I’d dealt with the hurdles of getting there (and there were several, both at home and on the short journey) and I’d thought I was safe.

I left feeling sad, frustrated, discouraged, alienated, and mad. I left feeling like there are no safe spaces. My chronic pain support group has been safe with health stuff, but my guard is up for biphobia when I’m there… what if I mention a date with a woman and someone reacts badly? Today’s event was the one space where no sort of -phobia or -ism is tolerated, but being ignored and avoided had the same effect.

Please, someone, prove me wrong. Tell me about a safe space. Or if you need to vent about your own similar experiences, go right ahead. Leave your thoughts in the comments and do your own venting.

I just hope that one day, somehow, some way, I really will find a safe space.