Disclaimer: This post includes stories that were shared with me by clients. Any information about their experience was used at their request and with their permission. Clients reviewed this post before it was shared with the public, and were given the opportunity to revise the post so that they felt that their privacy was protected. All clients connected with this post want their story to be shared to help improved education and other patient experiences. Nothing about their experience in therapy is revealed in this post.
I have written for a while now about the fact that I passionately believe mental health has so much to bring to the table with other health care professionals. I have also written about the need to include and value patient voices in health care conversations. Sometimes, since I interact with many committed, caring professionals and with many competent, compelling patients, I think that I forget how much more there is to do.
But I have had two experiences in the past few weeks that have brought home to me the clear reminder that we still have a long way to go.
The first was sitting with a client who has been dealing with a cluster of chronic health issues her entire life–initially diagnosed before she was two with asthma. Recently, the biggest challenge has been severe allergic reactions: nearly constant itching, swelling of lips & throat, rashes, etc. This client sought help at a specialty clinic. There she experienced several things that just blew my mind:
- Despite her clear statement that her concern was the allergic reactions, both her assessing clinician and their supervisor focused on her breathing.
- This capable, professional, adult woman was told something that approximated, “I am the doctor. You don’t tell me you have allergies. I tell you if you have allergies.”
- She was “diagnosed” with . . . drum roll please . . . asthma. A diagnosis she has had nearly all her life. Presented as significant new information.
- Despite expressing concern about any new medication because of a history of difficult (read life-threatening) side effects, she was given a prescription and told not to worry because it was an antihistamine. Upon reading about the medication, she learned that it is in fact a tricyclic antidepressant.
The second was with another client who has a life-long history with a chronic condition. She has managed this condition without any major complications, and has been diligent about her self-care. Her specialist recently retired, and she had a series of life stresses that did lead to a minor complication with her chronic condition. She made an appointment with a new specialist, who cancelled that appointment. My client had to reschedule several more times because of work commitments (appointments with other people in the office, not specialist). When she did finally get to meet the new specialist, before greeting her or learning her history, the new specialist said something to the effect of: “I am Dr. X, and the first thing you need to understand is that you don’t skip my appointments.”
The precise words used by my client were, “I didn’t know what to do. He just made me feel so small.”
These stories aren’t unique to my clients. I hear stories like this in the ePatient community all the time. I hear stories like this in my office all the time.
Let me be clear. This isn’t about bashing medical doctors. I know that these stories only illustrate a small part of what is going on in healthcare. I know that for each doctor who dismisses a presenting concern, there are many, many more who do great listening. In fact, in the same week, I had another patient tell me how a specialist made her feel heard and supported in a challenging medical quest. I know that for each patient who is made to feel small, there are hundreds of patients who are lifted, educated, & supported by their health care team. I know that for each specialist who fails to listen, there is a mental health professional who makes a snap judgment.
I don’t share these stories to point fingers or pass blame. In fact, I’ve been very careful to avoid any information that might identify doctors, clinics, or patients.
Instead, I am sharing these stories for three reasons. First, I want to continue a commitment to support everyone in healthcare who is trying to do better. To commit to real listening, engaged empathy, and respect of patient experience. Secondly, I share these stories to validate that we need patients in the healthcare communication process–to bring these moments to light. And finally, we have to know what is going wrong before we can make it go better. I want to help it go better.
So let’s talk about that. What can we do to minimize these moments in healthcare? Is it a training issue? A patient empowerment issue? A collaborative care issue?