What It's Like Being a Professional Patient

“So what do you do?” Someone asked.

“What do I do? Like for a living?” I replied.

That is a question I get asked a lot when meeting new people. I would love to have a response I’m proud of, a response other than, “nothing.” My time, however, isn’t filled in an office or behind a desk somewhere. It’s spent stuck in bed, in and out of hospitals, and in doctors’ offices. My profession is being a patient. It’s a profession that takes away almost everything. I get so good at being a patient that it becomes hard to imagine doing anything else. It becomes an identity.

My arms remember every IV I’ve had, my body overflowing with scars.  Everything down to my wardrobe is dictated by illness — it’s filled with PJ’s and comfortable clothes because I just can’t muster the energy to look nice. My medical team becomes like a second family. My conversations are filled with progress and updates about how I’m doing.

I get used to tests and procedures…living away from home. Missing my dog. I’ve gone weeks and months without fresh air. Being a patient is my life. It encompasses so many different facets of life that, like a disease, it spreads to those around me and they are affected as well.

For me, even the idea of needing help and being so dependent on others makes me feel vulnerable. My well-being is reliant on others, which elicits a sense of powerlessness. It can be difficult not to be able to take care of yourself, scheduling your day around your illness whether it be doctor appointments or medication. Around all of that, somewhere buried beneath is still me.

Being a professional patient is still making sure you don’t lose sight of yourself in the midst of illness. It’s a challenge to say the least, because it’s hard not to be consumed entirely by that illness. Even if your profession is being a patient, you’re still there under all that heaviness.  It’s not an easy thing to hold on to, and if you can hang onto that despite what you’re going through, then you can separate your identity from being a patient.

Despite who you are, what you do, or what you’re going through I understand the struggle when illness takes over your life. Fighting through it can take away everything you have, and sometimes you don’t have anything left to pull you through the moment. Remember that beneath it all, you’re still there, even when you’re profession is being a patient.