Feeling Strong as an Asthma Patient
Recently, I attended a scientific meeting that although was filled with amazingly smart and caring scientists, clinicians, patients, patient groups and other stakeholders. I felt slightly intimidated. Generally, I thought I had left most of those feelings behind me.
I was a confident asthma patient advocate
I pride myself on knowing my science or at least being inquisitive but why is that when I was face to face with my own doctor standing across a table for me. Did I doubt my knowledge or my right to be at this meeting? It was indeed open to patients and caregivers and I was there representing a patient organization.
I was discussing this with a good friend the other day and it was the level of personal investment that seemed to always enter the discussion. They are invested in my care and balancing a delicate doctor-patient relationship always hangs in the balance. I needed to root myself in my own advocacy skills.
Discussions with your doctor
My last couple of attempts at having discussions with my doc had not gone that well. They were met with some resistance and a lot of ego. The ego seemed to be a new thing. While we had differences of opinion before, there wasn’t any opposition to finding ways to work together. I initially thought it was that I had lost my fighting edge and that we had come so far. I finally realized that it was coming down to a battle of wills and ego. In my day job, I often have a line that I use when I work with volunteers: “I don’t entertain personality conflicts." This is what some of our conversations were boiling down to. I was going to need to bring this back to basics.
Physician: being open to the patient experiences and concerns and medical expertise from a shared decision-making lens.
Trying to meet in the middle
An area in which my doctor and I have struggled with is being able to see outside of the scene. Instead of focusing on answers we do not yet have, we try to maximize what we do know. This may mean focusing on quality of life versus just science. There is no doubt in my mind that living with severe asthma can be a frustrating place, from dealing with those that do not understand, to those that do but aren’t able to help. I have wondered if my doctor feels at a loss with some of their patients?
I know that I have personally received advice that I should fire my doctor or find someone else. In the past, I have considered this and even had ‘interviewed” a couple of other doctors. I also found that there wasn’t a perfect match out there. While it may be silly to some to stay with this doctor, the care is good, the access to research and new developments is excellent and while we may not always see things from the same place. I do believe that we can work through some of the personality issues.
Have you had to stand up for yourself in a doctor-patient relationship?
Do you get muscle cramps caused by your asthma medicine?