The 3 Types of Chronic Illness Patients

I’ve spent all my life, nearly three decades, in and out of hospitals. I grew up in the pediatric ward, celebrated holidays in isolation, and have had enough surgeries, I should be issued a frequent punch card. In all this time, I’ve experienced and witnessed an evolution in the type of patient I’ve grown to be. Also in that time, I’ve seen other chronically ill patients become different types of patients. One is no better than another, it’s simply the role and level of participation one takes as a chronically ill patient.

The first type is an Agree-er. Usually this type of patient is newly coming into understanding their own diagnosis and condition and is very compliant with whatever the specialist or primary physician recommends for treatment. New information can be very overwhelming and often it is comforting to defer to the experts in the field rather than have to sift through a plethora of medical jargon which does not make any sense to the patient. The downside to being this type of patient is when there are limited resources or experts for a particular condition. You are then left to trial and error for much of your own treatment.

The next type of patient is a Builder. This type of patient takes an active role in their own treatment, studies up on any existing information about their condition, seeks out opinions from other doctors in the field, and often consults with other specialist in related fields in order to maximize treatment options and preventative care. A builder is a lot like someone who is building their own “dream team” bench, consisting of multiple specialists and opinions. This allows a patient to be able to call up or pull a doctor when it’s time to discuss specifics about treatments. There are limitations to a deep bench, however. Often, methodologies or courses of treatment suggested by different specialists can conflict, and as a patient, you’re left having to call the shots, which some are not prepared to do.

The last type of chronically ill patient is a Pioneer. This type of patient is similar to a builder, but pushes the boundaries of existing information. A pioneer is sometimes a patient who has been told there is no treatment, no cure, and often has very little options available. They could also be someone who is on the lower end of the spectrum of their disorder, and utilizes their abilities to seek out more information and more options for those who are on the other end. Sometimes, they can even be someone who has been cured of an illness and just wants to find more treatments or raise awareness for their condition. To a pioneer patient, the information that exists is not nearly enough. They use their story, their case, their doctors and resources to maximize and build a presence for their condition. Unfortunately, being a pioneer patient is often an isolating experience due to rarity of a chronic illness. You also may encounter limited resources and funding for your chronic illness, which can be disheartening.

Growing up in the pediatric ward, I never knew I’d grow to be so many different types of chronically ill patient. But as I became an adult, I realized agreeing to what doctors wanted wasn’t always in my best interest, especially if they were scratching their heads about it. I took an active role in seeking out specialists who knew about my case and had innovative ideas for treatment. At some point, status quo wasn’t enough for me. So, I looked for ways to raise my voice, raise awareness for my condition, and to work with others to strive for medical breakthroughs.

I’m not saying being one type is better than another, as I’ve been all three types myself. My question is, what type do you see yourself as? Those around you? Because, regardless of what type, we’re in this together.