Miss•Treated is the brainchild of Katie Ernst after her struggle to get diagnosed as havig lupus. She's written novels for children and young adults, and has also written freelance articles for publications such as feministing.com, CBS Philly, and numerous other blogs and websites. Oh yeah, she's also a practicing lawyer.
Katie's Story in Her Words
I've been considering creating a website devoted to exposing misogyny in the medical profession for a while now, but my passion for this issue is virtually life long. My mother has struggled with chronic health conditions as long as I can remember. A few years ago she was finally diagnosed with Sjogren's syndrome, an autoimmune disease. Numerous doctors over the years attributed her symptoms to depression, malingering, or hypochondria. It took approximately twenty years post-onset of her symptoms to be properly diagnosed, and even then she was only diagnosed by an eye doctor who noticed the signs of the disease during a routine exam.
I have also struggled with chronic health problems. I've recently been diagnosed with lupus, another autoimmune disease, but it was a long road to get to to that point. When I was 19, I began experiencing severe bouts of fatigue and lightheadedness. The fatigue was debilitating and I passed out on more than a few occasions. (I could be standing talking to a friend one moment, face down on concrete the next. Let me tell you, that is not fun.) The response from my doctor when I came to him about these problems? "You're fine. It's normal for 19-year-old girls to pass out." I'll never forget that sentence.
A few years later I saw another doctor about my symptoms, the list of which had grown to a recurring rash across my face and chest as well as joint pain. He told me I was depressed. When I told him I didn't feel sad or anxious, he claimed that women can be depressed and not realize it or have any signs of depression other than fatigue. (I'm not sure which part of the DSM-IV he got that insight from.) I asked him how my joint pain could be caused by depression. He said, "When you're depressed, any ache or pain can feel like agony." I figured there was nothing he could say to this: "But how does depression explain the rash?" He admitted he couldn't fully explain that, but it was probably a stress response.
I got a similar reaction from three or four other doctors, so eventually I gave up going. What person in their right mind would continue paying people to demean them when they don't help you anyway? Whether they thought I was crazy or not, I knew there was something medically wrong with me. I figured it was probably related to whatever was wrong with my mom, but at that point she hadn't gotten a diagnosis either.
A few years ago, my symptoms recurred (as they tend to do every few years), and I finally went to a new doctor at the urging of my husband. I asked him to accompany me to my appointment because I'd noticed doctors are a lot less rude if there's a man in the room. After hearing my symptoms (fatigue, irregular heartbeat especially after reaching my arms over my head, lightheadedness, rash) the doctor asked my husband if he had anything to add. He said no; he was just there for support. I told the doctor I'd brought him with me because I'd found that doctors are more likely to take you seriously with a man in the room. The doctor replied, "That was a good idea. There's a woman who comes in complaining of similar issues, but I've noticed her husband never comes with her, so I've assumed he must think she's crazy which makes me think she's crazy too. Your husband being here says something. I'm going to make sure to run every test I can think of so we can figure out what's wrong with you." (Or, that was the gist of it.) You might think this was an old, male doctor, but this doctor was a woman. In her 40s. So discrimination can come from all types. She ran numerous tests and lo and behold, it turned out my blood work indicated I had an autoimmune disorder. I was ultimately diagnosed as having lupus which is strongly related to Sjogren's. This was approximately 12 years after being told by the first doctor that it's normal for 19-year-old girls to pass out.
The fact that I only was able to get a diagnosis because (1) I have a husband, and (2) he was able to take off work to go to the doctor with me is unconscionable. Why should a woman need a man next to her in order to get appropriate medical treatment? Why is it always assumed that women are lying or hysterical or seeing the doctor in some desperate bid for attention? I don't know a single woman who likes going to the doctor. Most women, especially those with chronic health conditions, dread going through this nonsense.
That brings me to why I've started this website. Something needs to be done about this issue because it's not just an annoyance. It's severely compromising the medical treatment women receive. To that end, this is what I'd like this blog to do:
- First and foremost I want it to be a place for women to share their stories. Being treated like you're insane because you have a medical condition can make you feel powerless. It actually makes you start to wonder if you might, in fact, be crazy. How could doctor after doctor accusing you of malingering, hypochondria or depression all be wrong? (Sadly, they can be and often are.)
- Second, I'd like it to be a place to share information about the medical, legal, and psychological research on this topic. I am a J.D. (that is, lawyer) who also received her B.A. in psychology. I love psychological research and lately there have been more and more studies on this topic. (For instance, showing that women are more likely to die than men under a doctor's care because their complaints are not taken seriously.)
- Finally, I'd like it to be a place where we can hear from doctors. What are they thinking when they interact with patients? Why are many so quick to discount women's symptoms? Perhaps if we could figure this out, we'd be able to bridge the gap between doctors and their female patients.