I evaluated a weight loss program years ago that consisted of three stages: all food controlled (bought from the company), some food controlled (some bought from the company, some bought by patient), and no external food control (all food bought by the patient). The biggest critique I had after several months was the difference in levels of support between the fully controlled stage and the half-controlled stage. When all the decisions are made for you, it can be easy to start building healthy habits. But when the patient transitioned from stage one to stage two, it felt wobbly. There was less support offered. I told them that it should be the opposite. Once the person had to start making some decisions on their own, support should have increased until the person was comfortable with the challenges and possible bad choices that were now in their hands.

It’s the same with patients.

I haven’t talked about policy in a while, but my inbox is telling me it’s time.

I personally believe that patients belong at every table where decisionmakers are formulating new policy because how do you arrive at the best solutions without input from those who will be affected by it? But it can be hard to find ways in, let alone find someone to take you seriously. This is especially true of legislative policy folks, whether at the federal, state, or local levels. We can go to town halls, schedule a meeting with the people who represent us, and some of us even get to testify before a legislative committee.

These are all excellent opportunities, but limited in their scope, if less so in their potential impact. A patient story can open the door to sympathy or empathy, and it can be an excellent tool for policymakers to use in their efforts to sway others, especially if they remember that one patient story can be representative of millions.

But it’s not enough.

The switch from out of control to tight control was jarring. I spent four days at the Joslin Clinic in Boston, participating in their DoIt program, which was a one-stop reboot. In those four days, I had laser surgery on both eyes, got actual, effective treatment for the neuropathy in my legs, saw a psychologist with experience in pediatric diabetes (who would later help me find my psychologist of 20 years), and was referred to a doctor close to my college who had trained at Joslin and practiced their forward-looking techniques.

Oh, and my mom insisted on dragging me all over the city despite the pain in my legs because she didn’t want me losing any more mobility. Understandable since she was the one who fixed me after the meningitis, but still painful.

But it wasn’t all smooth sailing after that.

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.