Healthcare stories?

[Andy]

Hi everyone!

I’m studying to be a doctor one day, and my dream is to be a good one. And for me, things like communication or inclusion are a huge part of that. Unfortunately, we don’t get much formal training and education on those and good role models are hard to find too.

So I wanted to ask if anyone has any particularly good, or bad, experiences or stories from healthcare setting that they want to share? I’m especially looking for examples of things that the healthcare professionals did or didn’t say or do, that made (or did not make) you feel safe, seen, taken care of or included, regarding your sexual identity, gender, disability, health history or anything else. It can be from GYNO appointments or any other healthcare setting. Any other thoughts, ideas or comments are appreciated as well!

Thank you so much

[KierC]

Hi Andy! I love this question and am so excited for your journey in medicine. You’re going to be a great provider <3

I’ve had quite the history with healthcare settings, and I’m happy to share a couple. The first one is not so great at all, but made me think a lot about what we as patients deserve, and about how the healthcare system in the US allows for so many gaps in care.

Starting with the not so great experience, when I was 18 I had a miscarriage in the emergency room at my college. I’ll spare us all the more intense details, but I’ll share some interactions I had with providers who really shaped the experience for me (for the worse, tbh… but it’s a good learning experience):

1. Most of the providers I saw that day didn’t speak *to* me, mostly *about* me to each other, and after about 16 hours I was let out with maternity pads, no pain relief, and with no explanation of what was happening aside from being advised to check in with my gynecologist. I was really scared and overwhelmed, and not knowing what was happening while also feeling like conversations were had without me present, made me feel really out of control with whatever was happening with my body.

2. I got an appointment with my then-gynecologist a few weeks later, and she congratulated me for not having to have an abortion, which was *infuriating* to hear. I wish she had asked me how I felt about it before congratulating me on something that was traumatic and out of my control.

These days, whenever I see a new gynecologist and they see the miscarriage in my chart, their reaction is *very* telling to me about what sort of care I’m going to get. I’ve gotten more congratulations than I’d ever like to count, but I’m happy to say that my current gynecologist asked me what the experience was like for me instead of assuming what it was like. She also noted that I was overwhelmed by the lights in the emergency room, and she dims the lights whenever she can for me. <3

Ok… now two good stories! My current primary care doctor is the absolute BEST. She takes her time with me. My last appointment with her, I came in with so many life changes and burnout that she immediately noticed and took the time to talk through each thing going on with me. She’s a harm reductionist and a community-minded person through-and-through, and never judges me. So, I don’t have a specific story about her, but she’s great, so shoutout to her!

Lastly, my dermatologist and I had a great interaction last year. I have a long family history of skin cancer, and had skin cancer myself when I was very young, so I’m always really concerned about that happening again. On top of this, I have several tattoos, and I sometimes feel worry and shame that the tattoos might make it harder to spot skin cancer. I told this to my doctor, and she took the time to explain to me that she’ll be able to tell even if I had tattoos covering my whole body, she even showed me a cool light she can use for my darker tattoos! She then asked if I have any favorites, so I showed her my tattoo of my late cat and she asked for pictures of her. It was just really sweet that she took the time to alleviate my worries and care for me as a person. <3

[amber]

Hi Andy!!

This is such a cool topic to ask about!

For me, the providers who I've had the best experiences with have always been ones who give me the space to talk. I tend to go into appointments with a lot to say and specific questions I'd like to ask, so the times I've left feeling upset or unheard where always times when I felt rushed or not truly listened too.

It may sound simple but being the person who speaks more is really important to me when I'm seeking care. And although this certainly won't be the case for everyone I think a doctors job is really to listen..and then help from there!

Another small thing I appreciate is when decisions are explained to me in a way I'll understand. Why this medication or test vs another one, etc.

[mikky]

The first time I went to a GYN for severe period pain, she told me I was probably "just traumatized from something" (huh??) and prescribed me with an estrogen-based birth control. I went to the pharmacy to pick it up, and while handing it to me the pharmacist asked if I ever get migraine with aura.... I was like, yeah up to 4 times a week, which was ON MY CHART. They very quickly told me I shouldn't take it and explained that estrogen-based options were contraindicated.

I really struggle with taking medication- it is a big ole OCD trigger for me. A few years ago I saw an amazing doctor, who actually heard my medication fears and would very carefully consider meds before prescribing them, pull up studies and show me data. He came up with the system I still use for taking meds: have my doctor and my partner read over the side effect information carefully, tell me anything I absolutely need to know, and let the rest be a mystery; start off on really small doses when available and taper up; and use other tactics that don't make the OCD worse. He also warned me that he had concerns about quality of patient care at the practice, and that he was going to quit to become a full time yoga teacher and take care of his kids and chickens :'-)

My current primary care doctor is also wonderful. In my first visit a few months back, we got to the end of the appointment and she turned off her transcription tool and said she understood that with anxiety and OCD in my chart I'm probably used to getting my pain written off as being a hypochondriac/anxious, and that she also guessed I've had my endo pain and other health issues ignored. She made me feel so seen and cared for and then has consistently backed that up with being considerate, kind, and thoughtful when I see her!!

[Asking Queries]

Content warning: medical, disability, and autistic trauma, discussed in some detail. 614 words long.

Hi Andy,

I’m also interested in being a doctor some day, and I’m very nerdy about medical care and try to learn everything I can about it. This is relevant to some of the things I’ll share.
I’ve been to a lot of doctors and other medical professionals in my life. I’ll give some general thoughts about what has helped me, and then talk about specific people/experiences. I have a lot to say, and I hope it’s helpful and not too much. If you have questions, I’m probably happy to answer them.

General thoughts:
One of the things that I’ve found really helpful is when medical professionals let me try to be funny about my identities. For example, I have a running joke with my family doctor that every time I see her, she learns something new (generally some niche detail about my medical transition or chronic illnesses), which is funny because it’s true.
Really small indicators of comfort with queerness, for example, using they/them pronouns easily, are really comforting to me.

Some notable good people/experiences:

I did weekly therapy with a nonbinary social worker for years, and it was one of the most important things that kept me alive and less miserable through years that got progressively more difficult and tiring. Literally all I knew of their queerness is that they are nonbinary, but that little bit of shared identity greatly helped me feel comfortable in talking about other parts of my queerness.

I told my dermatologist that I was medically transitioning. She congratulated me and said that it would help with my acne (it did). I still think about how respectful and matter-of-fact she was.

My family doctor always listens to my worries and addresses them, but is careful to not reinforce my health anxiety. She treats my knowledge of medicine as useful and explains things to me at that “advanced” level, which I find interesting and respectful, but also pushes back when I ask for something that isn’t necessary. She’s confident but also happy to be corrected. She’s also care about preserving my dignity when she examines me, for example, now that I have breasts, she is careful to keep them covered while listening to my chest. She’s great.

Some notable bad people/experiences:

I once went to a urologist for a possible fertility issue. He tried to convince me to let him do a sensitive examination—I don’t remember exactly what happened, but it was very upsetting. (Side note: for what are now obvious reasons, namely being transfem and having dysphoria about the topic, I didn’t and don’t care about my fertility, which made it even worse.)

A gastroenterologist attributed a supposed rise in the rate of autism to vaccines and unspecified “toxins”, which is both untrue (certainly for the vaccine part, at least) and very negative towards autism. I left that visit crying and angry.

A different gastroenterologist heard about the medical drink I had been drinking for months because of reactions to food, and declared it gross. I generally quite liked her, but that was a quite frustrating statement about essentially the only thing I had eaten for months, and a generally unkind thing to say about someone’s source of nutrition/food.

I’ve been to an emergency room five times, although only twice was something seriously wrong with me (to be clear, when I decided to go, I thought something was very wrong). Every time, I felt dismissed in my concerns and not treated as a full human, and I have a lot of trauma from some of the visits.

AQ

[Andy]

Hi everyone and thank you all so much for sharing!

It’s always heartwarming and inspiring to hear positive stories, and I’m really glad you all had at least some good patient, kind and caring providers seeing you as individual people with specific needs.

And I absolutely agree on the listening thing, amber! I like to say that even though we often *know* (how a specific organ, condition or medication is called or works for example), doesn’t mean we automatically *understand* what the person having them really needs, and the only way to find out is to ask and listen.

I’m also really sorry to hear about the bad experiences you have had, AQ, mikky and Kier. It’s so sad that in places and moments of crisis, like ERs, where kindness and humanity are the most needed, they are often the first things dissapearing from the interactions...