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.
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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.
I am very happy we have this blog I don’t feel alone
I am a registered nurse who’ has cervical Dystonia diagnosed 5 years ago my heart goes out to the people who have struggled longer
I did opt to have DBS surgery so I can continue my career it has been a long journey I continue to struggle with pain more so when my Botox wares off but I can hold my head up I was carrying it in my right hand and couldn’t turn too the left my sting skills were gone I was in a deep depression
I love my job of 35 years and I couldn’t do it
I recently had a battery changed to a 10 year battery that I charge myself and adjust my stimulator it has been an emotional roller coaster
Now the discovered from my peers and the hand book I can no longer do my job because the stimulator effects my patients and myself
So now I am retired on disability
And feel like my life is incomplete
I did not prepare for this
My mother has trigeminal neuralgia in her head so I try to be an advocate for here and yes working with in experienced Doctors is very frustrating
My name isNancy if I can be of any help to you please don’t hesitate thank you for being here it makes a world of difference to have support
Thank you Teresa for your timely words
So helpful …
My husband has cervical dystonia and we are often disappointed with the lack of respect we get at the hospital by the medical team. We have had a number of times where he hasn’t been listened too and for eg had Botox injected not where he wanted and then my husband has paid the consequence of that in his functioning and every day life until the next review where we have start all over again often explaining and advocating for us of what works best for his dystonia!
In our last neurologist review I had to remind them that he is a person and this is his life we are talking about.
I do believe it is so very much about their lack of knowledge which is compounded by the fact that they also have to acknowledge that they dont have the answers that actually the person with dystonia and family/advocates actually understand more about it than they do!!! I keep going to every appointment I can to support and advocate for my husband as much as I can because you are so right that the only way people will learn more… is through us on the journey. People with dystonia are all so brave and resilient managing especially when it comes to the medical part of this journey. Thou
we are lucky as we have a couple of amazing health professionals including Tom who are apart of our team helping us navigate this every changing abd evolving journey
So keep being awesome and helping others by spreading your journey
Thank you from us in New Zealand
Hi Kristy! It is so good to hear from you and so appreciative for sharing your experience. I know that many can relate, which I hope brings them comfort in knowing that they are not alone. Wishing all of you the very best and hope to chat soon 🙂
Connie,
Thank you for your words of care and compassion. I wish that more healthcare workers shared you views. I’m sorry that this too has happened to your mother. My hope is that with help from people like Tom who can help get the word out, and like you Connie, that can shre this with the professionals in your field, that we can bring about the change that needs to happen for all patients everywhere that have experienced such an experience. Speak out!
Teresa as a nurse of 20 years I want to extend my true apologies for the healthcare profession when we fail to listen to the patients we have the privilege of serving. My mother did not have Dystonia but she experienced the unacceptable care you mentioned multiple times. It churns my stomach when I think about it. When a person presents to a healthcare provider they need to be heard they need to be validated you are correct in saying that the person knows their body best and we are our own best advocate I often speak to fellow coworkers related to seeing with clear vision in other words a patient with a history of alcoholism or a patient who has a history of opioid abuse deserves to be seen as a person without that name attached to them yes it is in their medical history But that is not their identity we need to treat the person we need to listen you are correct in saying that the healthcare profession cannot be aware of every disease process; however, that is no excuse for not listening to our patients. One scholarly based article stated that patients are often interrupted within fifteen seconds after beginning to tell/share their concerns with their provider/ medical team. Caring individuals with a deep passion to serve others, work hard to achieve licensure. Hearts are in the right place; however, sadly decreased staffing, increased demands, and time factors can negatively effect the delivery of best care measures. With that being said, there is no acceptable excuse for less than optimal care. We can all learn from each other. Nursing journals may welcome you to share your experience, in efforts to educate nursing staff on the signs, symptoms and challenges that people with Dystonia experience. God bless you Teresa.
Hi Connie – Thank you very much for sharing those very thoughtful words from someone in the trenches. It is greatly appreciated!