Justice for patients?
This is a post by a guest blogger who describes an experience many of us can relate to
when it comes to the care we receive from health professionals.
by Teresa Catlin
Teresa Catlin, a long time dystonia sufferer, says that many of us with dystonia, chronic pain, and well, pretty much any chronic health condition, will be able to relate to a problem she experienced not long ago. It was in the emergency room at the hospital where she receives her care.
As she shares… I have segmental dystonia with hyperplasia, right side dominant. I understand that is a mouthful, but the key word here is dystonia because as many of you that have dystonia know, we have a condition that requires specific knowledge and care.
My dystonia, as the name implies, is all on the right side; neck, shoulder, elbow, wrist, fingers, backbone, hip, leg, ankle and toes. If the doctors and nurses, as well as any other healthcare professionals that have direct contact with us, are unfamiliar with our condition, it is imperative that they listen to us. We know our bodies and how best they can help us.
I was being seen for an unrelated problem and I had my care advocate with me. My care advocate is my cousin, Sarah. She has researched and studied dystonia and my specific type. She knows me and my body and its particulars. I have dystonic storms frequently. She is pretty much involved with every aspect of my care.
The care that I received at the ER was substandard and bordered abuse. There was no knowledge of my condition or how to be treated, handled, or cared for as a human being. They were not taking anything into consideration about my symptoms or what my care advocate and I were telling them about what they were doing that was not helping.
I understand that doctors and nurses cannot be aware of every illness, disorder, disease, or condition out there, but please show some compassion. LISTEN when I keep telling you that I can’t do something because “my body doesn’t move that way,” and “please don’t grab me there because it’s very painful,” or “no, I can’t sit down and that’s why I’m lying in this gurney right now,” and “no amount of what you want me to do is going to change that!” LISTEN!!
Sadly, I know many people who go to their doctors and the ER and get the same treatment. If you are one of those people and have not heard of anyone else going through this kind of experience, I am glad you are reading this because I hope it brings you comfort that you are not alone.
The problem is very much what I mentioned above; that doctors and nurses can’t know every health problem out there. I get that and accept that, but the other major problem is that they too often think they know better than us and sometimes end up hurting us or making us worse. At best sometimes, they make us feel shame, embarrassed, and demeaned. We need more compassion and understanding. There are wonderful doctors and nurses who provide this, but too many still lack these qualities.
A lot of it boils down to those of us living with these conditions to educate people. Too often, we don’t want to talk about our health problem, but if we don’t talk about it (those who know it best because we live it every day), who will? How will we gain greater awareness, especially for those directly involved in our care? We must speak up and demand that we get the care and compassion we deserve. It is imperative that we be our best health advocate.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.