Cluster migraines. Extreme weight gain. High blood pressure. Rachel Wilson’s many symptoms were troubling, but shrugged off by her primary physician.
Coming to grips
It was only when her ob/gyn recommended Wilson see an endocrinologist that she got an accurate but heartrending diagnosis: Cushing’s Disease. This rare disease is caused by tumors on the pituitary gland that, if untreated, can result in severe illness or even death.
“When I got my diagnosis, I wrote my first doctor a letter,” she recalls. “I used some PG-15 choice words, but I got the message across. I may not have a medical degree, but I know my body better than he ever will with his fancy, white coat.”
Misdiagnosis is unfortunately common. “Ask any Cushing’s patient, and we all say the same thing,” Wilson says. “We all get dismissed at least once.”
“‘I prepare for the first appointment like I’m preparing for a deposition. Your remission is out there somewhere, but you’ve got to fight for it.'”
While Wilson did finally get diagnosed, her battle with Cushing’s continues. She has had several surgeries and most recently was in remission for four years. “But in 2013, they found another growth. They’re going to hold off on surgery, but now I’m showing symptoms again. Here we go!”
Wilson offers advice and encouragement to others suffering with Cushing’s on social media and through her website. “You have to find your silver lining. There are so many bad things, and this takes a toll on you physically, psychologically and emotionally,” she reasons. “I’m always so moved that I get emails every week from people across the world. They treat me like a friend, because some part of my story resonated with them.”
What Wilson tells all of her readers, and anyone who has or thinks they may have Cushing’s Disease, is to fight: “Don’t give up. The most important thing is to find a good doctor. Then, have your evidence ready for them so it’s hard for them to say no. I prepare for the first appointment like I’m preparing for a deposition. Your remission is out there somewhere, but you’ve got to fight for it.”