I watched an episode of House that fired me up a week ago, so I wrote a little blog post. Little did I know that post would make its way around the interwebs so quickly, nor did I know it would cause such a commotion in the world of forums, Twitter and Facebook. But, when I got word of the buzz, I decided I wouldn’t stop there. For me, stopping short of something to help EDSers is just not something I am able to do. I give it my all when it comes to us, and so I continued to speak out…by writing letters to all of the executives at FOX, anyone and everyone in the writer’s group for House, and everyone else I could think of, including Rupert Murdoch himself. As is with contacting media sources, though, which I know from my prior profession, I wasn’t expecting anything back…or, at most a form letter response. I was quite surprised when the phone rang.
To give a little back story, the post I wrote was intended to get people to think; to think about how their actions affect others, how writing a TV drama episode can actually affect people in the real world, how we as EDSers deal with stigma in our daily lives and not only suffer from pain and trauma, but also from the sadness and frustration of people writing us off as psychological cases. I know that in writing my blog post, I wasn’t going to change the world, I wasn’t going to get the producers of House to create a different sort of a show, nor was I going to get any of my readers to miraculously find a way to make Ehlers-Danlos Syndrome stigma free. My intent was accomplished: I got people talking. All of my readers had wonderful things to say, whether they agreed or didn’t. Some were just happy EDS was mentioned on a television show, others were furious and felt they would now be looked at as hoarders or mental cases. My goal was to get us all, the TV show folks, the readers, the random Google searchers, to just stop and think a moment. And, in the end, I wanted those with Ehlers-Danlos Syndrome, like me, to just get some recognition.
Onto the phone call…
I was feeling very ill…I had my spinal cord stimulator placed in my back a few days prior and I was in awful pain. I wasn’t up for talking on the phone, but for some reason I answered it anyway. Boy, am I glad I did! David Foster was on the other end, and was very pleasant to speak with. He offered his condolences for the way the episode made me feel, and also said he was personally touched while learning about Ehlers-Danlos Syndrome. He made me feel very at-ease, and though I was in a lot of pain, I was so happy to hear from someone who seemed very genuine and down-to-earth. He used some medical terms, which caught me off guard, and I wondered right away if he had a background in medicine. He remained vague, since I am sure he had to given the position he was in, but at the same time made me feel very comforted in knowing that he researched EDS a lot for the show, and while they didn’t showcase a lot of manifestations, he hoped people would use the show as a tool to research the illness themselves (which I know a lot of people have done). Not only did he leave me with a great vegan tidbit, he left me with his information to contact him if I ever felt the need. He also said a formal letter would be on the way shortly.
A day later, via FedEx, the letter arrived. I got what I wanted…a little bit of recognition. And, therefore, while I don’t agree with the way the episode represented EDS, I am happy that the writers at House took the time and effort to respond to my concerns.
The letter reads as follows:
“Dear Ms. Davis:
I am writing in response to your letter of April 15, 2011. First, let me thank you for you thoughtful comments and your interest in our show. We appreciate the support.
As a long time viewer, I am sure you know that House is a show about the “one in a million case”, the odd presentation of a rare disease that has eluded the detection of other smart doctors. These “diseases of the week” are inherently complex with many symptoms and a wide range of manifestations. As such, there are many, many individual, unique patient stories that could be told. However, we can only tell one person’s story, and even that story is subject to the limitations of network television.
I understand that House will likely be the first time most of our viewers have ever heard of Ehlers-Danlos Syndrome. I can only hope that this exposure will motivate viewers to learn more about EDS through other excellent resources such as your blog. Our research into EDS for this episode has led all of us to have a deep appreciation for all who live with EDS. We can only hope that our viewers will gain similar awareness.
David Foster, MD
Co-Executive Producer, House”