Rage is a complicated emotion. Sometimes it is straightforward, a response to a slight or an injustice or just plain losing your patience. But sometimes it’s a mask, a defensive response to harder emotions. It’s a whole lot easier to understand rage than to look inward and see what else might be there. There is a host of emotions that come with being a patient. For many of us, whether inflicted by the external or imposed by the internal, there is always what I call the trifecta: guilt, shame, and fear. The three of them always seem to be locked together in a nearly impossible Gordian knot, and they are often the root of why patients act in self destructive ways

I had a moment yesterday. It was a moment of frustration as I looked at the speaker lineup for a conference I was curious about. It was a global conference, so the ideas on the agenda had the potential to affect billions of patients instead of mere millions had the conference been national. Of the 26 speakers featured on the site, only one was from a patient organization.

A few weeks ago, I wrote a post asking healthcare decisionmakers to take a moment to examine how they are communicating, just to make sure they were really communicating what they thought they were. Because when you talk about people as subjects, it’s hard to understand how those subjects might be receiving what you are trying to say.

Here’s a little context.

Someone asked me recently how I juggle everything. Well, I am not sure juggling is the right word since I have more conditions than the world record for items juggled, but it will suffice for now. And that doesn’t include the rest of life: job, family, friends, bills. I had never thought about that specifically, but I knew exactly what to tell her: the hierarchy.

Now, I don’t have as much “the rest of life” as most people do. I am unattached with no kids (accountable to no one suits me just fine) and I am my own boss, so those pressures are self-imposed and easier to deal with simply because I only have to figure out how to deal with me, and most of the time I can figure out what I’m thinking. (Clients cause a little stress, but more because I want to be sure I am meeting their needs than struggling with complicated work environment.)

The medical part of “the rest” – it’s a lot. But like any structure, it builds brick by brick.

When you successfully defy the odds, it is not uncommon to become a boundary pusher. If you got away with it once, why not try again? And again? And again?

When I was first diagnosed with diabetes, I was scared enough to follow the rules for a whole six months. But the whole time, my medical team was using scare tactics and cookie-cutter treatment plans that effectively sowed the seeds of rebellion into something that would grow into something as complicated and impenetrable as the giant thorny forest outside Sleeping Beauty’s castle.

In fact, the seeds had been sewn long before that. In order to psychologically survive my recovery from meningitis, I’d had to raise defensive walls to protect myself from the staring, the rejection, the forceful loss of childhood. It might have receded if I had been able to grow up normally after regaining function. But I didn’t, and anyone who recognizes defensiveness in themselves knows that the right trigger can get you from calm to rage monster in zero seconds flat.

It’s funny how you can sometimes be surrounded by people who love you and still feel all alone. Every diagnosis is a trauma that comes with residual physical issues, and no matter how many people want to help and support you, in the end it’s your body and all the decisions and their impacts are yours.

I have been reminded recently that when you are a chronic patient, one of the most dangerous feelings you can have is that you are all alone. I am lucky. When I got my latest diagnosis, I felt that way, but it was brief, simply because I have gone through the process so often.

In my experience, there are two main ways that feelings of isolation as a patient can get bad.

I’m tired. March is always difficult. Most of the worst things that have ever happened to me occurred between February 26th and March 28th of various years. Maybe it’s all the worst things, depending on how I feel about the ranking of events in my head. And my birthday is somewhere swirling around in the middle of that giant swamp of emotional baggage.

This year, I spent three days in a row in the same bathrobe. The doctor whose appointment broke the cycle told me that his office was an equal opportunity sartorial office and if I wanted to come in my bathrobe next time, that was fine. I wish he hadn’t told me that. It exponentially increases the risk that next year, it will be five days. At least I was still brushing my teeth.

Adding to all that was my realization that the work I have been doing might not be getting through, as indicated by the fact that I have to keep saying the same things at every webinar and conference I attend. This is not news to my fellow patient advocates. They have been doing the same for years and years longer than I have. To them, I am a relative newbie at five advocate years old. This year, it’s the cherry on top of my annual Month of Depression.

OK, ok, time to stop procrastinating. I promised to start talking about the hardest patient part, so here we go.

I was actually in a pretty good place before my diabetes diagnosis. Over the six years since I had started walking again, I had recovered from meningitis and paralysis to a point where my residual weakness was invisible. I wasn’t popular – I was never popular in school – but I had good friends. I wasn’t particularly athletic, but I was good academically. And as tweenagehood began, I lost weight, which brought with it a certain kind of attention I had never received before. Already sensitive about my body from having to be in a wheelchair and relearn to walk in public spaces, it gave me a new kind of self-consciousness, but I liked it. It was warm and positive in a way I never thought I would feel about my still-slightly-impaired body.

Of course, I didn’t know that I was effectively starving.

A little more than six months ago, I wrote about receiving my thirteenth chronic diagnosis, plantar fasciitis. I did not expect that I would be writing so soon about the next one.

And yet, here we are – adenomyosis – a condition where uterine tissue grows into the muscle. It is similar to endometriosis, but the one symptom I have is only related to adenomyosis. It’s common, especially in women who have had kids (I have not), and right now, it is no more serious than my other nuisance conditions. It causes me to make minor accommodations but does not interfere with how I live my life. This could change if it causes my intermittent anemia to become more present.

But it’s hitting me hard. Maybe harder than it should.

We’re Turning Five!

I never thought I would be able to keep a blog going this long by pulling stories out of my head. It’s pretty close to 250. That’s a lot of stories. (Don’t worry, there are plenty more.)

To be honest, I never thought I would put my medical life out there for public scrutiny. What happened was a complete (and quick) 180. Given my extreme risk aversion, these kinds of quick reversals are not usually on the table, and they are definitely not things I am comfortable with. ut it seemed necessary at the time.

Here’s how it started.

I stumbled across this again recently. Photographer Josh Rossi and his wife, Roxanna, transforming kids with serious illnesses and disabilities into their favorite superheroes. There’s a lot to ooh and aah over, and it’s definitely a feel-good story. At the end of one interview, the Rossis talked about how happy it made the kids during difficult times.

But it’s more than that.

Kids who are sick, whether it’s chronic or acute, don’t have the luxury of childhood the way most people experience it. They become aware of their own mortality, and their identities- how they see themselves - will forever be impacted by their experiences as patients. Perhaps they don’t understand mortality in the fullness that adults eventually come to experience it, but they know that the world isn’t entirely safe.