Today’s Daily Prompt states: “Describe the last time you were surprised by the intensity of a feeling you had about something, or were surprised at how strongly you reacted to something you thought wouldn’t be a big deal.” This one was easy, because I’d already written it.
Excerpted and condensed from a chapter of an unpublished book manuscript.
In October 2012 I arrived at my rheumatology appointment planning to ask for a surgical referral. We had been discussing hip replacement surgery for some years, and I felt the time had come. It had, in fact, been coming for 13 years, since 1999 when a critical illness left me with damage to the cartilage in my left hip joint. The joint had been steadily deteriorating ever since.
At my previous appointment I had expressed frustration at repeatedly being cautioned that 50ish was “young” for hip replacement. But my doctor’s response had been encouraging: “Ultimately, Anna, what matters is what you are experiencing—how much pain you’re in, your loss of mobility, and how it is impacting your ability to live your life.”
So I spent six months soul-searching. I researched the surgery. I talked with a colleague who has undergone a hip replacement about her decision and her recovery journey. I tried to rest and exercise a little more and eat a little better. I (grudgingly) traded in my heels for sensible shoes. And I made a concerted effort to monitor what aggravated my hip—what it could and couldn’t do. I gave a lot of thought to how it was affecting my ability to live my life.
The routine at my appointment is that an assistant — a doctor in training– sees me first to update my file and do a preliminary examination. I don’t know the assistant all, and he doesn’t know anything about me beyond the technical details in my chart. He doesn’t know my story. He begins to ask the usual questions:
“What medications are you currently taking?”
I recite my laundry list of pharmaceuticals.
“Are you experiencing any problems?”
Here, I think, is my invitation. “Yes, actually. The pain in my hip has been getting significantly worse. The acetaminophen is not managing the pain. My mobility is also getting worse…”
I don’t get very far at all into my carefully rehearsed speech before I realize that he has stopped looking at me. Instead, he is paging carefully through my file. He lands, triumphantly, on an X-ray report from roughly a year ago. “It says here,” he declares in a tone that is clearly intended to be encouraging, “that the hip wasn’t that bad.”
A dark cloud blows over my psyche and I feel myself begin to fold inward. Suddenly, I desperately need him to stop talking. I don’t want to be told my hip looked OK in last year’s X-ray when I have just told him that today it is not OK. The X-ray does not tell him that my hip hurts now. That it wakes me up in the night and makes me walk with an uncomfortable limp. That it has become a barrier to basic daily activities like tying my shoe and trimming my toenails. That it stops me from enjoying things I want to enjoy. But I am suddenly unable to articulate any of these things to him. Instead, I feel a wave of panic rising and can no longer fight back tears. My capacity for rational thought falls away as I sink into the overwhelming despair that no one cares about my lived experience. I fear that I am just going to be told that I will have to put up with the growing deterioration of my hip until I am much, much older or completely unable to function—whichever comes first.
I am too distressed to be able to explain to the assistant why his attempt at reassurance has affected me this way. In the moment, I don’t even fully understand it myself. All I can do is blurt out, “I just want to talk to my doctor!” I have to repeat this request three or four times, before the assistant finally scurries out of the exam room in search of her. When he arrives back with my doctor in tow, I am still in a state of high agitation and barely able to articulate why.
It takes me 48 hours to process for myself why I fell apart so completely in that moment, and to recognize my reaction as a post-traumatic stress response.
This was not the first time a doctor had glibly told me that I was“fine” when I knew that I was not. And the last time that happened…well actually the last several times that happened…
Are the subject of the rest of my book.
Muddy River Muse 
Pingback: Daily Prompt: Intense | Chronicles of an Anglo Swiss
Pingback: Why so intense, Surfer Rob? | Rob's Surf Report
Really good post. In my opinion, the most important thing I want my doctor to do is to Listen To Me. I think most doctors are good people who are trying to help, but at least here in the U.S. they are so rushed. The other day I went to see the doctor and he was already backing out of the room ticking things off his tablet and asking me “Any more questions?” which he obviously was hoping I didn’t have. It is so dispiriting. What is more important to us than our basic well being, after all? And then to be brushed off…. I’m glad you spoke up and held your ground.
Thanks. There’s an excellent book called “How Doctors Think” by Dr. Jerome Groopman. In it he references a study that demonstrated that doctors interrupt their patients an average of 18 seconds into the patient telling his/her story.
Ahhh. What a twit. Especially when someone is dealing with chronic pain, it is not helpful to go back that far in time except to ask you to compare it to the time of the xray. Oy.
I used to be a passive patient, listened to the doctor’s advice, took it. Asked no questions. In a way, I wish I could go back to that time because I was blissfully ignorant.
Now I am older, wiser and work in medicine/medical litigation. So my doctors are afraid to be stupid in front of me. It has definite advantages. I am also not shy about complaining if I am not being treated correctly. Last December, I was ill and had been for a month with on and off urinary tract infections. Achy, low grade fever, flu-like symptoms, fuzzy thinking. On one particularly bad day, I spoke with the nurse-practitioner and said I was concerned about sepsis and that I wanted a blood test to make sure I didn’t have it. She said, “no, that won’t be very efficient. What you need to do is wait until your fever is 104 degrees and then go to our ER.” Even sick as I was, I knew that was stupid, but I wasn’t thinking clearly. I called back the next day and insisted (I did not have sepsis) and then I complained to my doctor. This person will never work on my case again. And she hasn’t.
You have to fight for yourself or have someone with you who will. And if you’re sick enough, or in enough pain, you really need an advocate with you. That way you can lose it and still get your message through.
Thank you for your comment! If this book of mine ever finds its way into print you should definitely hunt down a copy. In your line of work you would find my story very interesting!
Actually, I can volunteer to read it in advance…
Hmm. That’s a tempting offer.
I always enjoy catching up on your life Anna…it brings me back to our childhood, and your posts about health remind me that I’m lucky in many ways. Thanks! I also find it interesting that I just posted on my own blog about something…and used a picture of human skeleton to help illustrate my thoughts. We are on the same track, it seems!
Oh, poor you, Anna: my heart really went out to you when I read this post. I do hope things get better soon. xx
Things are much better now a year later– I have actually had the hip replaced and am in the best shape I’ve been in years.
Oh, that’s great: I am so pleased for you! xxx
Pingback: SO… I LOVE YOU | hastywords
Pingback: First you save a life | Muddy River Muse
Pingback: of loss | Anawnimiss