If any of you caught last night’s episode of House on Fox you are probably as irritated as I am. The episode ended with a diagnosis of Ehlers-Danlos Syndrome, which under most circumstances would be an amazing thing. I am usually thrilled to pieces at the thought of EDS being mentioned on a mainstream show; we EDSers benefit highly from the public being familiarized with our illness. Whether using it to raise money for research to help find treatment options or even a cure for EDS, helping physicians keep an open mind during patient diagnoses, helping to create an understanding and loving network of family and friends, or helping an EDSer understand their symptoms better, media is a very effective and highly influential tool. Unfortunately, bad media attention can be even more damaging than no media, and most of the mainstream documentation of Ehlers-Danlos Syndrome, in my opinion, seems to be unhelpful or even negative.
In the episode, House’s team was treating a patient, and as his team often does, they headed to the man’s house to see if they’d come across anything to help diagnose his illness. While at the home, they ended up finding his wife hiding under some garbage; she was a hoarder who had turned their home into a disaster area. They took her to the hospital, too, as there was something obviously wrong with her. The wife had some serious mental issues, and they were trying to find out what triggered the hoarding. While in the hospital she had a heart attack. The doctors didn’t mention any other symptoms during the entire episode. Simply: hoarder, mental issues, heart attack. At the very end of the show, the doctors came into the woman’s room and told her the reason she had become a hoarder was linked to stress from several miscarriages. They said the miscarriages were caused from Ehlers-Danlos Syndrome and asked her if she thought she could have EDS. They told her they could treat her symptoms, but that she also needed psychiatric treatment. Mind you, not once did they tell her what EDS was or what the symptoms are. That concluded the episode.
In my opinion, the show seemed to make it sound like someone who has miscarriages can, in turn, suffer from mental illness and become a hoarder — symptoms that result in a diagnosis of Ehlers-Danlos Syndrome.
I love House; I have seen every episode and watch it on my computer each week. I suppose, for House, it was normal and enjoyable. To me, though, EDS is wild enough to support an entire episode. If the writers would have focused on a “normal” EDS case with the mounds of symptoms we have I believe it would have made for a very House-style episode. At the very least, an explanation of EDS to the woman would have been sufficient. They mentioned nothing about severe pain, joint hypermobility, skin issues, GI problems, fatigue, heart problems or any of the other many symptoms we experience. They didn’t talk about how EDS can be extremely debilitating, nor was there mention that some types of EDS are life-threatening. Instead, they focused the episode on mental illness. To top it off, they didn’t tell her what her diagnosis was, as most doctors do, instead they asked her if she thought she could have EDS. How would someone know what EDS is in order to give an educated answer? Most doctors I see don’t even really understand EDS, let alone a patient who is experiencing none of the typical symptoms of this genetic disorder. I feel the writers could have done a much better job, successively making a positive impact by helping to promote awareness. Instead, it was another show that made EDSers seem crazy.
I was very upset by this, especially so, because a week ago I went to the doctor for my psychological evaluation – the first step in getting approval to have a Spinal Cord Stimulator implanted in my back to help the excruciating flank pain I live with every single day. I will give you the specifics about the appointment in a post soon, but to summarize, I spent 5 hours in an office trying to prove I have flank pain, that my Ehlers-Danlos Syndrome is real (apparently my stacks of medical records, info from all of my doctors and the geneticist’s diagnosis don’t prove enough), that I don’t want to kill myself and that my pain is not just a product of my mental illnesses. The majority of the appointment was spent doing personality tests that were hundreds of questions long. It was emotionally and physically exhausting, and if I don’t get a “passing grade,” I won’t be able to have the SCS trial. After all of this, watching an episode of House that portrayed EDSers’ most prominent symptoms as psychiatric problems was extremely disappointing.
While I have no control over what the writers of the show create, I do have a chance to take a stand. I am voicing my opinion, helping to spread awareness of Ehlers-Danlos Syndrome, and making a positive impact for the EDS community — something House M.D. had a chance to do, but failed at.
I hope you are having a wonderful night. Continue to keep hope, be strong, and stand with me. In the face of negativity, we will be the positive light.