How My Video Camera Made Me Human to My Doctors

So often my opinion hasn’t mattered because of the invisible nature of my symptoms.

I’m an Invisible Disability Project community member, and participated in an educational social media project called “This is Me.” I spent a few weeks reflecting on my life with invisible disabilities, Crohn’s disease and PTSD. I was hospitalized when my “This is Me” videos were posted. I had an incredibly difficult surgery that lasted four to five hours. A week later I developed full system blockage in my intestines, and then an anastomosis which led to an abscess filled with infected hematoma. Several times I came close to dying in the hospital. I’d like to think that I didn’t die partly because of the support I was receiving from sharing information with others. Only when the videos went live did I realize how many individuals were seeing them. A community of 65,000 individuals is a lot of people!

I shared the videos with my nurses at the hospital. At first they were skeptical of watching my social media posts, but I was persistent. The nurse manager of my unit later came to me, and stated that her father also had Crohn’s disease and passed away years ago from colon cancer. Until she watched the videos, she never knew how hard it must have been for him to live with the illness. He was private about it and never let anyone know how it affected him. Kind of like me, I thought… 

The nurse manager and I discussed how to improve patient care at the hospital.  We formed a bond, and she spread the videos to her staff: nurses, medical assistants, nurse practitioners, physicians and PAs. The nurses expressed support, some changed their approach to managing my care, and many discussed their own experiences. One nurse discussed her own invisible disability, type I diabetes, and how it affects her day to day.

Another nurse initially expressed frustration with my videos. She disagreed with the idea that society doesn’t do enough to help people like me. She vehemently disagrees with Obamacare, and I do not. I explained that although there are parts of Obamacare I do not agree with, I do agree that no one should be denied insurance coverage for pre-existing illnesses, nor should there be a lifetime cap for catastrophic insurance coverage. The nurse had no idea that Obamacare includes provisions that help people like me maintain insurance coverage. After the discussion she changed her tone, and became a partner in my medical care.

My surgeon reviewed the videos as well, and was supportive. He said that the things I said, needed to be said, and he needed to hear them. 

It was extremely validating to have the medical community hear what I said to them.

These experiences were phenomenal and very personal to me. They made me less jaded at the time. Since my discharge from the hospital I have re-experienced many frustrations with the medical system, which reminds me of the constant need for advocacy and education.   

I find that we are all on the same side. Despite different political views or opinions about who deserves what, or how many people should receive assistance, we can develop empathy towards one another to find solutions that help the most people.  My wife and I are grateful for the support of the Invisible Disability Project community.  Thank you for helping us get through this tough time in our lives.  We hope to be here for you too.

Watch Kris Sutter’s This is Me videos from Invisible Disability Project.

This is Me is an IDP educational media project that disrupts the silence around invisible disabilities. If you would like to participate, sign up here.

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