Human First, Patient Second

Managing life with POTS

My first introduction to treating postural orthostatic tachycardia syndrome (POTS) came extremely early in my physical therapy career. As a new grad, it was challenging to put my “agenda” to the side and realize that addressing something like POTS is not black and white unlike a knee replacement that comes with a clear protocol. Instead of a brief interview that transitions smoothly into treatment on the first day, I knew that not deep diving into the complexities of a medical history that can come with a diagnosis like POTS would be doing a disservice to my patient.

So we talked. We talked for 55 minutes about which of her many symptoms were constant, intermittent and what things were the most limiting for her on a daily basis. POTS can have a variety of nasty symptoms including lower extremity circulatory issues that may require compression stockings, bloating, dizziness, palpitations and “brain fog”, just to name a few. POTS is often a concurrent diagnosis with Ehlers Danlos Syndrome (EDS) which is a condition characterized by hypermobility. This can ultimately result in subluxations and pain. POTS predominantly is diagnosed in females with a mean age of 30 years old (which I just happen to turn this week). 

My passion for treating these conditions probably has a lot to do with the population being at a similar stage of life as myself. When you hit 30, it’s typically not a slow period of your life. It’s a time where careers are still being developed, financial stability may not quite be achieved and children are many times in the picture. When I met the patient I described above, she had two young boys and was already unable to continue in her career. She was doing everything she could to get out of bed to care for those boys while dealing with every symptom I listed and more. The other difficult thing about these conditions, is they are usually not evident to the naked eye and therefore, showing up to an event in a wheelchair or with a cane is not something taken lightly. As we start to dissect these logistical and social aspects, we can begin to see how just understanding this diagnosis and its symptoms does not begin to touch the actual impact a condition like this can have on a person and all aspects of their life.

I by no means claim to be an expert on POTS or EDS. What I am an expert on is meeting my patients where they are at and problem solving with them in a way that is customized to each individual’s situation. Many times a diagnosis like this is slapped on after months or years of symptom progression and the patient walks out of their doctor’s office wondering what in the world to do with it. So they turn to Dr. Google and we all know how that goes…

Circling back to the patient in front of me – she was actually a Physician’s Assistant, which honestly made me nervous because I felt like she was way more versed on her condition than I was. Fast forward to nearly four years later and she’s writing me a review saying I “saved [her] life”. How can a new grad have that kind of impact on a patient? 

She said it came down to the fact that I treated her like a “human first and a patient second”. There is honestly no better way to tagline what I seek to do. For this patient, I saw her for all her roles first: a mom struggling to keep up with her rambunctious boys, a professional who still had many ambitions and a new friend who cheers me on from across the country to this day. When I changed my lens to seeing those things first, I became more invested in the outcome. It became less about getting caught up in the symptoms and far more about the end goal. 

Keeping this human first, diagnosis second approach has allowed me to better connect with my patients. It allows me to be more well rounded in my treatment and programming to mold it in a way that fits better into someone’s lifestyle. A huge frustration I have with insurance visit limitations is that they basically say “we think you can get this person better in 12 visits”. Maybe I can get their pain under control during that time or decrease their dizziness, but what about this active mom of two who went from chasing around her two boys and is now virtually bed bound? Is decreasing her pain and dizziness enough? Is that success?

As an active person myself, I can tell you that this would never cut it for me. My definition of success is not just what looks good on the paperwork back to insurance. It’s feeling unrestricted in my life. I want to help you get to the highest place in your potential. That may take 12 visits in some instances, but it may take 12 months. It may even be ongoing to some extent if the condition is chronic like we’ve described above. Care has to be adaptable and change with the progression or fluctuations of these symptoms we are managing. It has to be tailored to life. Let’s find a way to become comfortable in this gray area together.