Hello to the community! Following personal experience I recently learned of a huge problem in healthcare, and I would love to hear people’s reactions, experiences and thoughts on it:
When I was 19 years old I walked into the office of the head of the spinal department at a leading hospital. I’d been suffering from debilitating chronic back pain to the point of not being able to function for 3 years prior, following a major spinal surgery when I was 16.
The doctor heard my story, and asked me to step out of the room so he could speak privately to my father, who had accompanied me. My father and I were both taken aback. I’m the patient, and I’m an adult. But I stepped out.
My father came out a few minutes later. ‘He said there’s no physiological reason for your pain. That it’s in your head, and that you’re depressed’.
I was dumbstruck. By the cavalier misdiagnosis, by the stinging dismissal of pain that was completely wrecking my life, and by the disrespect of not discussing it with me directly.
I slowly walked to the car, barely able to stand from the pain, with the proverbial ‘it’s in your head’ writing off that women have been dealing with for centuries ringing in my ears. I felt helpless, scared and alone.
12 years and ~40 doctors later I am now completely pain free thanks, in part, to medical professionals who believed in me, and worked with me in partnership to help me overcome my pain.
I’ve since often wondered how many other young women receive similar feedback. In retrospect I wish I had shared more about my journey earlier - maybe it could have helped others in knowing they’re not alone, that they should never accept dismissal or bias, and that there is hope.
I recently experienced another gross misdiagnosis of someone close to me, this time a cancer diagnosis with much more severe consequences.
A year and a half ago, my father, until then a strong and healthy 70 year old, walked into his Primary Care Doctor’s office and told him he was having trouble swallowing. Protocol dictates that his doctor should have sent him to see a gastroenterologist immediately. Instead, the doctor wrote it off as reflux and prescribed medication.
After the symptoms persisted and worsened my father eventually did see a gastroenterologist, which led to a diagnosis of stage 4 cancer - 3 months later.
Despite extraordinary efforts and a brave battle, the cancer was diagnosed too late and my father passed away. It has been the saddest and most difficult thing I’ve ever had to deal with, for me and for many who were close to him.
Following this I found myself waking up at night, wondering if these experiences were just a coincidence, or if there’s something that could be done differently. I did some research and what I learned shocked me to my core.
I learned that medical dismissal, gaslighting and misdiagnosis is far from just my experience. In fact, it’s one of the biggest problems in healthcare.
I learned that medical errors are the 3rd leading cause of death in the US, following only cancer and heart disease.
That every year 40,000-80,000 Americans die from preventable diagnostic errors alone.
That when you walk into a Doctor’s office, 1 In 10 times you will be misdiagnosed. And if you have a serious medical condition, it’s 1 in 5 times.
I also learned that errors in diagnosis happen much more to women, people of color, members of the LGBTQ community, and people with emotional challenges.
That, for example, female-specific conditions such as endometriosis, often take 10 years or more to be diagnosed.
That women are 50% more likely to be misdiagnosed following a heart attack than men.
That women of color have 3.5 times the mortality rate of white women during and after pregnancy, similar to women in developing countries.
And that LGBTQ people are twice as likely than others to feel their provider dismissed their concerns or assumed something about them without asking.
The last thing I learned, and this is what shocked me the most, is that the healthcare system seems to view this as business as usual.
Imagine an airline where 10% of planes crash because of human error and bias. Now imagine that when that plane is filled with women or minority populations, it crashes even more. How long would this airline stay in business? Would we continue buying tickets for our parents and children?
Wouldn’t you think that these numbers would constitute a state of emergency and that fixing it would be the top priority?
Instead, this problem is often being swept under the rug.
I’ve already come across hundreds of stories of people from all walks of life dismissed and misdiagnosed by the healthcare system.
And we are all dealing with this alone, and aren’t learning enough from the experiences of others.
This is why I decided to share my story and to offer those interested to create a space for learning about this problem and how we can combat bias in medicine, for sharing our stories, for supporting one another and for consulting with one another, in order to protect ourselves and our loved one’s when receiving healthcare.
I feel it’s up to us, patients, caregivers, and all health consumers who care and are aware, to change this reality. We need to come out and share our stories, until we can’t be ignored anymore. And we need to create supportive spaces where we can get advice, think what action we can take, and support one another before and after these experiences.
If you’d like to be part of a community with this focus, you’re welcome to join here: https://www.facebook.com/groups/medicalmisdiagnosis
I would also love to hear any feedback, thoughts or experiences.
My hope is that we can together help create a powerful force for much better healthcare, one that is more equitable, more respectful and more exceptional, for the benefit of ourselves, our parents and our children.
Thank you for listening ❤️
https://ift.tt/VhNT9JQ Submitted October 24, 2022 at 04:02PM by Yael_theworld https://ift.tt/hDTAiKE