Phases of Being Patient
It dawned on me the other day that we have different phases of being a patient. I am currently going through the I-don’t-know-how-to-be-a-“non-research patient”-phase. There are many great things about being a research patient. You are doing your part for science, and research often leads to discoveries and sometimes cutting-edge treatment.
My patient journey
Research, by its very nature, is a very controlled and specific process. When you are not a research patient, care is neither better nor worse, but different. I was looking for an answer to a question about the time span that I could have a biologic dosing and a flu shot. This sent me down a hole of googling, journal and monographs reading.
When I was participating in a study, there was a set amount of time that I should wait between taking a biologic dosing and having a flu shot. I found it incredibly frustrating that I could not find this information this afternoon. If I was a current research patient, I could most likely make a quick call. Instead, I was going to have to get in line, ring the doctor's office and hope that they have an answer.
The phases of being [a] patient
The other patient phases I like to think I have been in are as follows. If you are curious, I tend to think that I still go between each these phases.
The naive patient
I took everything that my doctors said at face value. I did not question anything, I didn’t advocate for myself, I didn’t even keep my own notes. As a patient with a chronic illness, I highly recommend taking an active interest. I was finally fed up and woke up one day, met the most amazing patient advocates and began my journey as a patient advocate.
The “mad as hell at this diagnosis patient”
This is a phase that I still drift in and out of. This phase usually occurs after a period of uncontrolled asthma and being in a bit of an asthma funk. In particular, this manifests itself when treatments had failed to improve symptoms and wreak general havoc on my quality of life. The good news is, that I have been able to bounce out of this stage.
The “I don't trust you at all" patient
This is when there a lack of confidence in your medical team or support system. I had this particular experience with my first specialist. They told me to be patient and I will be better in two years without much support on how that was going. to occur. This was a major push for me to make a change in what I need in terms of care and my role in it.
The “how can we work together" patient
This usually involves coming to terms that it is going to take a collaborative approach. That working with your team is critical but also be an advocate for yourself.
The "I am empowered, hear me roar" patient
I am happy to report that I spend most of my time in this phase. I am generally, active, engaged and generally know when to ask for what I need and participate in decisions about my own care.
What type of patient phases do you identify with?
I would love to hear from you in the comments below.
Do you get muscle cramps caused by your asthma medicine?