“Frustration – the feeling of being upset or annoyed, especially because of inability to change or achieve something.”
My mantra for today – I have no ability to make this disease disappear. I have no ability to make someone accept patient involvement. I have no ability to make someone recognize the value of a patient centered foundation. (Even though I tried, as discussed in my last post – Was it Something I Said)
HOWEVER, it also does not mean that I will quit trying.
Having been diagnosed with a chronic disease I feel more strongly about patient involvement and have much less tolerance to “fluff” in the form of confusion or a frivolous attitude. I will continue to be directly involved in the decision making for my healthcare. I realize that may involve finding a physician who believes more strongly in partnering with me in this journey. I still have no idea what triggered the direction of my appointment – and that bothers me.
This issue has made me think specific to what I want from my medical professionals. I’ve experienced some great professionals in my lifetime, but it only takes one to upset the trust you have, or need to have.
So, here is an open letter to my doctor as a follow-up to the frustrating appointment …..
1. Above all, understand this – my health is extremely important to me, especially now that I have a disease that will live with me the remainder of my life. I realize I am only one of thousands of patients you see, but for the very short time I am with you, it’s all about me.
2. Please be clear in your diagnosis and explanation. It does not need to be lengthy, only clear and concise. Don’t throw a new diagnosis in there and walk out the door.
3. Treat the patient, not the HAQ.
4. Respect the fact I do try to educate myself to have the best conversation possible with you. I do care about the time we spend together and want to make the most of it.
5. Confusion does nothing positive for our appointment. It only leaves me fearful and uncertain.
6. I don’t mind a lighthearted comment or two, but I do NOT need continued metaphors, euphemisms or joking when discussing my health.
7. I realize you have a lot on your mind and schedule each day, but I wait far past my appointment time to see you and my apologies, but I am not concerned that your staff messed up your schedule and booked you in two different locations on one day.
8. Treat me with the same respect I treat you during our appointments.
9. Realize patients are essential for your profession and livelihood.
10. I want us to be partners in the journey …. can we?