“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 
I love this post SO much. The video is amazing, and it reflects my experiences so much.
I’ve had a few amazing doctors and specialists, and a whole bunch of terrible ones too. I think it’s so true what Dorothy said in the video – if all the doctors had to be really sick and really scared for a while as part of their training they’d certainly develop a lot more compassion.
Thank you for writing this post.
I can’t tell you how many times I’ve felt dismissed and looked down upon. I have always felt that (some) doctors see themselves as a seperate entity to us mere mortals, that they are god-like. I’ve lost count of the amount of times I’ve been asked to “liaise through my secretary” as if I’m not important enough to dare to send an email direct! It’s not true of all doctors, of course – as with us mere mortals, they come in all different shapes and sizes 🙂 It is a huge source of frustration for me that the key to my possible recovery lies with the people who could know the most about it, who have no urgency about it, no passion for it, no understanding of it. It’s their rules or no help given.
I am 3 years in to my headache and I do wonder if I had a different personality, if i were louder, ruder, more demanding, would I be nearer a solution?
Your advice is good, and if I ever feel better and am able to read again, letters will be wriiten!!
Toni
Hi, Toni –
Thank you for reading my blog. I’m glad that my advice might help you in dealing with your doctors and letting them go. I’m sorry to hear that you’ve been dealing with headaches for three years. That must make it so difficult to write and focus.
I also wonder sometimes how my personality affects the way in which I communicate with my doctors. I feel like I was too patient in the past and made excuses for the doctor’s behavior (“They have other patients to see,” “They work long hours,” “They’re probably having a bad day,” etc.). I respected their profession and I would put them on a pedestal and blame myself. Plus, I was also too tired to really do anything and when I felt better I didn’t want to think about it at all. However, I feel like being ruder or louder would probably sabotage that relationship and look bad to other doctors. So my dilemma continues to be how can I be firm and convey my needs in a way that the doctor listens? And how can I make sure that a doctor who hasn’t treated me with respect understands that I will not accept this kind of behavior? I was just thinking today that if I couldn’t speak up for myself or write a letter maybe I could ask a friend who’s familiar with this doctor to help out. Maybe she could proofread my letter and let me know if what I wrote was clear and professional.
Of course, I also try to tell the doctors that do listen and help how much I appreciate what they do and why! Sometimes the clinic that my doctors are part of have comment cards and a special program that celebrates doctors who get good reviews from their patients.
It’s also impossible for me to reach a doctor directly by phone or email. The process is to talk to a receptionist who then talks to a nurse or medical assistant who then talks to the doctor. Later that day or the next, the nurse or medical assistant calls me and relays what the dr said. This means I have to put a lot of trust in the nurse or ma to accurately convey the issue to my dr. If they’re too laid back (which is not good if you need a refill asap) and I hear nothing from them, then I have to start the phone process all over again. If it’s obvious they didn’t give the dr the correct info, then it means more back and forth and sometimes I may have to make an unnecessary appointment or even go to immediate care (which is tough because I need to get permission from my insurance co first). Fortunately, the majority of my doctors’staff has been pretty good at communicating with me.
I hope you’re able to find a good doctor soon, if you don’t already have one, and that you’re able to be ditch the unhelpful ones. I also hope that you get closer to having answers, treatment options, and that you have some relief very soon.
Best wishes,
Maria
I love Dorothy! Great post 🙂
Thank you! Dorothy is my favorite!