Thursday, February 4, 2016

Facing Forward: Katie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Katie
Location: Philadelphia, PA
Diagnosis: Lupus
Age at Diagnosis: 30

How are you currently treating your condition?
Since the New Year I've made taking care of myself a priority. I've been walking 3-4 miles per day and I've been trying to eat healthy. No particular diet. I've just been eating lots of fruits and vegetables and less packaged foods. Thankfully I'm not currently experiencing a flareup. 
What are the biggest challenges you have faced since your diagnosis?
When I have lupus flareups I can become almost completely debilitated. I get extreme fatigue that keeps me from normal activities. When it's really bad, it can be difficult for me to speak or even watch television because I'm that fatigued. Those times are the worst because I feel trapped in my body. For the most part, my mind still stays active, so having to lay on the couch and not do anything is the worst sort of torture. I recently had a baby, and I was pretty much out of commission for the entire pregnancy. That was frustrating. Thankfully I've been much better since she was born, but it's still a struggle.

What are your favorite tips and tricks for managing everyday tasks?
Not overdoing it is the most important thing. If I overdo it, I can set myself back for weeks. Other than that I take each day as it comes and hope I feel well that day.

How do you manage to keep facing forward every day?
I have no difficulty facing forward. Less difficulty than many healthy individuals I know. My condition has made a lot of the things I'd like to accomplish much more difficult (some impossible), but there are always other things that I can do. I went to law school and graduated top of my class. I practices for a year and was quite successful, but I realized that if I kept going in that field I was going to severely compromise my long-term health. I wasn't yet diagnosed with lupus, but I know I had some sort of autoimmune issue by that point (due to my mother's diagnosis). Thankfully, my husband supported me leaving legal practice and I began writing. I've since written numerous novels and I also blog about medical sexism and do other freelance writing. Do I wish I didn't have a ton of student loan debt for a degree I can no longer use? Absolutely. Do I wish I could do more to contribute to the family income? Yes. But everyone has their own struggles. Life is always a game of making the best out of difficult situations.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Diagnosis day for me was more of a relief than a traumatic experience. I'd been having health problems since I was a teenager. I would faint periodically for seemingly no reason, and I felt like I was going to pass out for much of the day. I'd have strange rashes that would come and go, joint pain, and bouts of severe fatigue. I could go a couple of years and be fine, and then have six months where I was severely debilitated. For about twelve years I was told by doctor after doctor that these symptoms were all in my head. Starting at 19, one doctor told me that it was "normal for 19-year-old girls to pass out." Another doctor asked me how many times I'd actually passed out, and I said three, but since then I sat down whenever I feel woozy so I didn't fall and hurt myself. He said if I'd only passed out three times then I was over-dramatizing things and there was no need for concern. (Because the fact that I had the good sense to sit down to prevent myself from passing out indicated that I *did* have a mental health issue?)

I eventually went to see a psychiatrist who told me that I had no mental health issues and I needed to go back to my doctor and get a full work up. It still took another 8 years to get to a diagnosis. When the tests would come back normal (such as a thyroid test) the doctor would say, "There's nothing wrong with you." When I'd point out that there was clearly something wrong with me regardless of what the tests were saying, the doctor would say that I sounded like I wanted to be sick, which meant that I was a hypochondriac. I didn't *want* there to be something wrong with me. There just was something wrong with me, and so I wanted to figure out what that was. Personally, I think it would indicate some sort of mental health problem if you didn't want to find out what was causing such debilitating symptoms. 

I've done research on this issue and have since learned that this sort of response from doctors when dealing with women patients is the rule rather than the exception. Doctors are far quicker to attribute a female patients' complaints to neuroses whereas they'll believe men's reports of symptoms. This sort of dismissive attitude leads to thousands of women dying each year, as doctors dismiss not only women with chronic illness, but also women with acute symptoms. Thousands of women each year, for example, are sent home from emergency rooms while they're having a heart attack because doctors are too quick to attribute their heart attack symptoms to anxiety. Similarly, it takes women years longer to be diagnosed with brain cancer because their neurological symptoms tend to be chalked up to attention-seeking behavior. Women are even less likely to be put on organ transplant lists. I could go on. 

Do you have a blog you would like to share?
Yes! The advocacy that I'm doing regarding the Issue of medical sexism can be found at my website MissTreated. There you can read dozens of studies showing that medical sexism is real and a serious problem. Moreover, the blog is a place where women can share their stories of being dismissed or otherwise mistreated by doctors. The only way we're going to gain traction on changing doctors' attitudes is to show that this isn't one or two women experiencing this. It's virtually all women, and it needs to end. So if you have ever experienced dismissive or demeaning doctors, I invite you to go to the website and submit your story. 

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