In the last week or so, some of my work projects are picking up, and it’s making me think (beyond the project. Of course, I am thinking about the project.). A major part of one of them is the idea of “treatment success”. I have not heard it often, but I get the feeling that this phrase is commonly used by non-patient stakeholders to help them determine what specific approaches are working and which aren’t.

Now, I am a big proponent of patients developing their own goals and making sure their care team is aware of them, especially when those goals differ from the clinicians’. But oddly, I never really thought about what success would look like as it pertained to those goals.

Pretty sure most patients don’t think about success the same way other stakeholders do.

I’ve often thought feeling isolated is one of the biggest threats to the patient community. When you are struggling to manage the demands of a medical conditions on top of the rest of your life, it is not uncommon to feel like you are the only person dealing with your particular set of circumstances, that no one else could possibly understand what it’s like to be you.

It’s lonely.

Don’t you just love it when physical trauma results in psychological trauma?

I spent over a decade working as a contractor for the Department of Defense. Whether you are working in a healthcare setting or not, it is hard to spend time around soldiers and not learn a fair share about post-traumatic stress disorder, a mental health condition that affects those who have experienced or even witnessed an extremely stressful or scary event.

Symptoms fall into four categories:

We all have them – those healthcare stories which invariably result in the silent question, “Did you really just say that to me?”

The one that stands out most in my patient life was when a Fellow who had never met me before spent time arguing with me over my labs, then dismissed three months of hard work as the margin of error. I still want to slap that chick when I think about it.

In the interest of the absurdist nature patient life often assumes, here’s another one.

It’s coming up on my 10th patient interview at Georgetown. I always enjoy it. I get to connect with an endocrinologist I’m still close to, even though it’s been about 15 years since he actively treated me. The students also seem to get a lot out of it. Every class is different, and the interview goes where they want it to, so I never know what I am going to talk about. Oh, and it is surprisingly cathartic for me to talk about my experiences in long form (usually between 60 and 90 minutes). An odd development for someone who previously never talked about my patient experience unless specifically asked.

I was talking to my endo about how we should change it up a bit this year, and he mentioned that a student had commented once that the interview had been depressing. I don’t usually have access to the feedback they collect on the class other than that the students get a lot out of it, so I had never really given much thought to the dark nature of my stories before.

It’s an election year, and I can safely say it’s one like no other in history. Most people don’t pay much attention until after the World Series in October, or at least until after Labor Day. It’s a lot. I wouldn’t be surprised if our election cycle is the longest of any country in the world. I know it’s the most expensive.

As someone who has spent a lifetime in and around policy and politics, I definitely fall into the DC masochist category. That is, I pay close attention the whole time. I track polls, I read policy, and no matter how angry or frustrated it makes me, I can’t look away.

Let’s talk about control.

Universally, the chronic patients I know cling to control of everything they can in their personal and professional lives. That is because, by definition, patients have lost control over the most basic and fundamental part of their lives – their physical selves.

This is what it’s like to be controlled by your condition:

I love the Olympics. It’s nice to take a break every couple of years and immerse myself in a little patriotic competition. Unsurprisingly, I pay the closest attention to the sports I participated in – archery, gymnastics, swimming, and all the horsey stuff. I still love horsies, though it’s been a long time since I rode.

The conversation around 2024’s Games has been colored by a lot more healthcare than usual, especially in the sports I follow.

It’s the end of Chronic Disease Month, and in honor of that, I wanted to talk about how, if we have to be labeled as disabled, as many of us are, that we understand it’s not just a label. It is also a form of protection. I don’t play the disabled card often – I could have had a handicapped license plate when I first developed neuropathy 27 years ago – but it is a tool. Like all tools, it serves a purpose, and all of us should know that purpose and how to use it when we need to.

I’ve always felt strongly that it’s not really fair that we ask clinicians to be experts in patients when there is so little access to us, so when I started this blog, I looked for way to reach schools beyond Georgetown Medical School, where I give an annual talk driven by about 400 medical students. They ask, I answer.

The advice I got most often was to get involved in Grand Rounds.

For those of you unfamiliar with Grand Rounds, that’s when a doctor goes on rounds at a hospital accompanied by young hopefuls, and they discuss you and your case as if you weren’t there. It is a time-honored tradition of how not to communicate with a patient.