By Ellen Lenox Smith
I always enjoy meeting new people and having the pleasure of learning about their lives. However, when we are heading off to meet a new doctor, all that goes out the window and I instead begin to feel stressed about that first conversation. I know the appointment will include forms, not enough space to fill in my diagnosis, surgeries, and food and medication reaction list, for example, yet understanding this will all have to be questioned and discussed. Also, after not being diagnosed correctly for fifty-four years and then facing most in the medical field have little knowledge of my condition called Ehlers-Danlos Syndrome, I have had too many experiences of not being listened to, believed, or having one showing interest in trying to help me. So, I tend to start off feeling skeptical that this will just be another waste of time.
So welcome to the life of those of us living with complicated conditions. After addressing twenty-four surgeries, my poor husband now steps out of the room during a new doctor’s appointment. He just finds it too painful to hear that review again all the horror we have had to face and learn to overcome. But what about me? I never have the luxury to also step out – I have to be there and review it all and answer the questions. But believe me, I wish I could also step out and not partake in the needed medical exchange.
We are about to go meet a new specialist for the jaw. I hear he is dedicated to those of us with EDS and a wonderful, skilled, compassionate person yet the stress is still in me thinking about meeting him. I would love to run away from this appointment and pretend I don’t need his help. I don’t want to be reminded of all we have gone through and it will have to be reviewed and discussed. But I need his help, so once again, it is time to grow up and get through this and use a more positive attitude!
Suggestions on how to get prepared:
- Arrive with a list of what you need to ask or address
- Arrive with a paper to take notes on and a pen that works.
- Arrive with your medical information organized to draw from
- Arrive planning on staying on track with what this doctor can help you with instead of getting off tangent and dwelling on issues they can’t take on.
- Arrive sounding as educated as you can about your medical issue and what you need for help from them.
- Arrive with an open mind
- Arrive with the hope this person will be of help in your journey!
- Arrive – don’t run away, even if you feel like you want to.
May your appointments be pleasant and met by one that wants to listen and try to help you. May you not be judged and instead be respected. It doesn’t seem like too much to ask, do you think?
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell! I Live With Pain– And Have a Good Life, Anyway,and My Life as a Service Dog!