“You need counseling.”
“You should exercise more.”
“You’re a perfectionist.”
“Is someone abusing you?”
“It’s so funny how your legs shake! Why do they do that?”
“It’s all in your head.”
Sound familiar? Like something a doctor or nurse might have said that prevented you from getting a proper diagnosis and appropriate treatment? I bet you have. I know so many women who have had doctors dismiss them while blaming their symptoms on vague and baseless issues: stress, school, family, poor self-esteem, age. It seems to happen more often to women, especially younger women.
When I was 18, I had a doctor scold me because I stated that I had stomach issues but also pointed to my lower abdominal area. “I can’t help you,” he said. “If you don’t know where your problem is.” And he didn’t. I felt like what could have been a teaching moment turned into an excuse for him not to help. It was the beginning of my illness, and I didn’t know how to advocate for myself or how to even explain what was going on. I thought a doctor would work with me to understand what was happening to my body; instead, I was humiliated. Maybe I was mistaken to expect that a doctor is also an educator, someone who helps their patients learn more about their bodies and overall health but I don’t think I was wrong. (One day — years later — I was working at the public library when that very same doctor came to my desk to check out his items. I don’t think he remembered me and I felt so angry at that moment. Not enough to say anything to him but just enough to think to myself: “I HAVE LUPUS! LUPUS, YOU FOOL! AND RAYNAUD’S! AND FIBROMYALGIA! AND SIBO! AND…”)
What I wish I could have done is what Dorothy does in the Golden Girls clip below from a two-part episode called “Sick and Tired.” (The story is based on the experience of Susan Harris, one of the creators and writers of the show.) Dorothy has been suffering from severe, crippling fatigue for a while, going from doctor to doctor, trying to find one who will take her symptoms seriously. Eventually she finds a specialist who cares and listens and is even able to provide her with a diagnosis. At the end of the show, she has a run in with one of the more terrible specialists she’s seen; he had blamed her problems on her age and suggested changing her hair color to feel better about herself.
It’s a funny but moving moment. I know it’s something I wish I could have said. At this point in my life, I’m fortunate to have found a great primary care physician who’s referred me to excellent specialists. If you don’t have a diagnosis yet and have had bad experiences with nurses or doctors, please don’t give up. Take someone who can advocate for you to your appointments, ask friends or doctors you trust for recommendations. If you need to fire a doctor, something that’s so hard to do, write a letter explaining why you’re moving on or don’t (sometimes we don’t have the energy to confront a doctor in this way). It’s never easy! I’ve been fortunate that moving made the decision for me.
But now, if I had to do it, I think I would probably do three things to prepare me for this process: (1) request my records before I fired the doctor so I can see what they have said about my condition and me (that way I’ll know what info my new doctor will see), (2) write a calm and clear letter stating my reasons for letting them go and maybe send a copy to a director, and (3) explain to my new physician the reasons why I decided to find a new doctor and provide them with a written timeline of my symptoms and any treatment I may have had. Writing a letter (2) makes me anxious just thinking about it! So if I’m not brave enough or don’t even care to write a letter or give any kind of explanation when the time comes to say “Later, dude! Thanks for nothing!”, I think at least getting my records and having a conversation with my new physician would still be very helpful.
-md
And Then I Got Sick 
