I really am a headcase sometimes. A couple of weeks ago, I mentioned that I needed to get a cortisone shot. I expressed then that I didn’t want to. I have been avoiding having one for years and years.

Why? Because I have hang-ups about pain.

It’s not what you think

I actually have a very high tolerance for pain. Some of the highlights are: having my neck forcibly un-paralyzed in one yank when my mom decided that we could deal with paralysis on the left side, but my neck (a neutral area, neither left nor right side) was a step too far; having an electromyography on dying nerves; and squeezing three sessions for my last retinopathy surgery into one.

Those were all necessary pains. Well, maybe not the electromyography. But they all had to happen for me to move forward. My issue is with unnecessary pain. If something painful is somehow voluntary, it’s not going to happen. (That’s why I will never get a tattoo.)

Fear is an instinct, a response to stimuli so ingrained that once you get away from the obvious (scary movies), you may not be able to discern a cause. You just feel it.

Not so in this case.

Somehow, I had gotten through my first, and still non-compliant, year of college with that trifecta of guilt, shame, and fear hanging around my neck.* I really shouldn’t have gone hundreds of miles away. I was unprepared to maintain my disease, even at the disastrous level I had been, away from my support system, and my academics had suffered, especially in the first semester. Toward the end of my freshman year, my feet started to hurt. By the time I accepted an invitation from a friend to join her and her family in North Carolina’s Outer Banks, I could barely walk.

Emotions. I’ve been thinking a lot about them lately: warm fuzzies from nieces and nephews who say they would rather stay home and play with me than go on vacation; bittersweet pride in a family member who just graduated and will be moving away, at least for a while; even a little bit of fear because I am going to have to have a cortisone shot (I don’t WANNA!) and I can’t think of a way to avoid it. I’ve heard they are painful, and I would rather just live with it, but this issue – trigger finger in my thumb – had become more than a nuisance, especially if I want to pick up the toddlers in my life.

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.