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Your quote, “I am untrusting and mute because I am interacting with people who are mostly unwilling to admit that anything about my body lies outside the limits of their knowledge.” Hit me hard. I had been a nurse for over 23yrs when I was forced to retire due to long covid. The timing of my original bout of Covid did not match up with the initial incidence in the US despite boarders not being closed & lack of testing. Reports of Covid being in blood donations & waste water prior to March 2020 did not get the same attention as other news due to its political consequence of a botched pandemic response. Despite having all of the markers & symptoms that have been published, I’m still gaslight by physicians. Their frustration is palpable when they prescribe me a medication for a symptom & it doesn’t work, as if I’m determined to be sick. It was the first time in my life that I was mute & unable to advocate for myself. The added pressure & anticipated trauma of each appointment further shut down my brain. I needed my husband to attend my appointments so he could advocate for me. Side bar- I was also treated much better when he was there compared to when he wasn’t there. That is a whole different topic that needs addressed. I learned to take my voice back by writing out my goals for the appointment. What questions I needed answered & what topics were off limits to help steer the conversation. I also gave myself permission to leave at any time during the appointment if I felt dismissed or unsafe. That was the most liberating part. I haven’t had to use it yet, but I know I can at any time.

My suggestion for the medical community is to look into your practices. There needs to be a balance between efficiency & time to establish trust. For example: the medical assistant who rooms you says, “so no changes to your medications & problems, right?” has already told me they don’t care & need to move on. The easy reflex is to say “no changes” & that is hardly ever accurate. Most people will not remember medications or problems that were documented at the last visit unless asked about each one. Trust can be lost that quick into an appointment.

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Thank you for sharing this. I’ve found the same strategies for managing my mother’s many doctors as she navigates cancer treatment: making lists of questions beforehand, reminding her she can ask about and choose options that the doctors don’t present, etc.

And yet I still have trouble speaking up with my own PCP, even though he’s proven himself to be much more curious and willing to listen than most of the others I’ve worked with.

Also? I know a LOT of people who had “the worst flu/bronchitis” they’d ever experienced in the first 2 months of 2020, myself included. I appreciate your perspective on this.

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Thank you for this. I'm a 25-year-old woman, and one of the perils of my adult life has been learning that doctors are human. I have anxiety that presents in weird ways, one of which being that I used to love going to the doctor and dentist as a kid/teenager. When I went to the doctor's office, I was going to be fixed, point-blank. In the doctor's office, I would be overcome by the feeling I now get on airplanes: everything is out of my hands, but someone else knows what they're doing. Needless to say, I didn't have many big health issues as a kid. I also struggled with speaking up for myself, so if there was something bothering me that the doctor didn't fix, that was only because I hadn't told them about it. When I turned 18 and finally told my doctors about all of the anxiety, digestive issues, and "feminine"(?) issues I'd been quietly struggling with for years, I learned pretty quickly that normal protocol was guessing at best and shrugging me off at worst. I'm fine with trial and error, but I so often get the feeling that my doctor feels pressured to give me a clear answer and prescribe accordingly. It would be so refreshing to hear someone tell me that they don't know but we can try xyz, and if that doesn't work, there's always abc.

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I need to come back and finish reading this but all I’ve been thinking so far is “don’t even get me started about medical professionals lacking the ability to let us in on the fact that they “don’t know”, “it is out of remit”. The whole 20 year period I went to the doctors, told them very specifically what I was living with, was told it couldn’t be, too hard to diagnose.dismissed one way or another, time and time and time again. At no point did one ever turn around to me and say “ I haven’t had any training in this area”. “It’s complex and not straight forward to understand, “let me run some tests”, “here’s a few simple questions that will clarify one way or the other”. Things changed when i started researching the eventual misdiagnosis and realised it couldn’t possibly be the tension headache they made out. “Easy to diagnose migraine” a doctor finally shared with me - at the point of becoming chronic with it, unable to function, life and career in tatters. “I can’t refer you to the hospital until you’ve taken at least 4 different types of medication” even though my body was saying NO to meds, I stil had this belief “specialists” were there to help me get to the root.”they’re not sympathetic to migraine” what she and the neurologists failed to tell me was that they didn’t have the interest nor the training or understanding either.

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Its heart-breaking and ridiculous that you’ve had this experience, Amber. I had an opposite experience where I was at a neurologist for a suspected issue and he told me he was more interested in my migraines which were clearly getting worse and that if we didn’t nip them in the bud PDQ I might end up with them permanently. He then clarified that ‘just a migraine’ hasn’t any just about it, and that anyone with more than 1 migraine per month needed to be under the care of a neurologist. He wasn’t cosy, but he was honest. I am sure universal health care is part of this, and there is still a big element of luck in getting seen by an expert who can recognise our symptoms - and that is deeply unfair on so many levels. I’m glad you’ve found your own way to manage your chronic health. I wish you’d had help when you needed it. I wish that for all of us.

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Aw thank you Michelle. I’m so glad to hear a success story. I’ve found the neurologists in the know tend to have migraine themselves (or in the family) and have taken a special interest. There are without doubt some great medical professionals out there and, like Rae was saying later on (when I went back and finished reading) our healthcare services are life saving. The migraine world summit states that only 8% of migraineurs receive effective treatment (worldwide). To me it’s been helpful to understand the role of healthcare professionals (in the main) is to save lives, treat disease and ensure our survival. Creating health and healing isn’t (generally speaking) part of their agenda and doesn’t feature in the training. I saw it described as unfortunate on a recent post by dr chatterjee but I wouldn’t necessarily agree it’s unfortunate, more something for us to understand. So that we can know when we are in good hands with the healthcare service/where we are meant to be and when we can explore other avenues. Or that we’ve even got a choice and that there are other ways we can approach our health.

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Thank you for this piece. Beautiful writing and gorgeous subtlety.

I wrote about the first time I made a mistake on a patient’s cancer treatment. And how her response guided the next 20 years of my practice.

💕

https://open.substack.com/pub/cancerculture/p/i-made-a-mistake?r=yjs6z&utm_campaign=post&utm_medium=web

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Stacy, I am teary having just read your post. Thank you so much for sharing it here, what a gift. I hope more doctors are inspired to be so honest with their patients (and themselves). Well done.

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Yes just today had to undergo a medicine stress test because both hips are shot and I can’t walk hardly at all. Three assistants one for the IV, one for the blood pressure monitor, which I hate that thing it hurts my arm every time and the ultra sound lady who dropped the side of the table every time she had to get to another angle of my heart. Annoying uncomfortable experience and of course I couldn’t wait for it to be over and forgot to ask any questions at all. Now I’ll have to back track and find out what exactly it all means. American medical care while in very bad shape the people performing the services are genuinely kind and compassionate which I’m grateful for.

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Thank you for this article. I have been perplexed at my "going mute" or more accurately very limited vocabulary in front of my doctors. Especially with specialists.

However after decades of experience, if they strike a nerve by completely negating the reality of me and my fellow patients who have myalgic encephalomyelitis then I have been known to have a lot to say!

And ignoring my previous records... sheesh. You hit the nail on the head there!

Congratulations!

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I have also been told my cervix is curved by one doctor at one pap smear, only to have another doctor at another pap smear say "No, it's not." !!! I think it may just be difficult to tell what's going on up in there. It's not like it's a large or well-lit space.

I know I've had trouble seeing the back of the headlight inside the hood of my husband's Prius, because whoever designed it seemed to think jamming everything real close together wouldn't make it difficult to see what needed to be done or get one's hands where they needed to go. And I definitely thought at one point that the headlight needed to be rotated 90 degrees from how it actually needed to line up, and spent several minutes trying to force it in that way.

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My family has spent a lot of time being mute at the doctor. We've been through it—disorders, diseases, mental health crises, surgeries, accidents, acts of violence, declining health. I can't count the amount of times we nodded and smiled and said, "Nope, we're good. We understand everything." It took decades of misdiagnoses and dismissive comments and failed surgeries before we started to speak up. It leaves me in tears and angry a lot, finding a new doctor more often than ever before. But telling a doctor they've said contradictory things or asking why a test is necessary or saying, "No, I won't do that" or "Yes, I have questions" is the reason I'm not covered in stitches and in a wheelchair. Sadly, this is not hyperbole. There are still times I lose my voice, though. I never know why it happens, but it brings me more shame than it did before. I know better, now, right? I can do it. Except for today or last month. Maybe tomorrow too.

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I don’t find myself mute, but I do often find myself overly trusting and often walk away realizing there were 10 other questions I should have asked. I’m frustrated by the waiting. I’m frustrated by the lack of time, although I’ve never really felt rushed. I started seeing a naturopath (I recognize the financial privilege to be able to do so) and while I started because I wanted what felt more natural medicine, I find I appreciate now how I don’t have to wait and that our conversations feel like a partnership.

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So much of this resonates with me...I have a curved cervix. My Pap smears and IUD insertions have always been very stressful because of this...and like you, there have been so many times where I just...become completely mute. It’s so tough. The medical field has a long way to go with the way it interacts with patients around their vaginas and how it rebalances power in these situations.

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Back again 😆 I can’t even tell you how much it pains me when I see chronic illness warriors publicly share “no known root cause”. All illness and disease has a root cause. There is a difference between what we are medically told and “truth”. It’s the truth of what we are living with and enduring that we need to get to the bottom of. That is possible.

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...cont’d.....by a bizarre twist of fate, by the time I saw the neurologist I was completely disabled by the illness but at the same time had also experienced some kind of awakening. I knew then that I needed support, was beyond desperate for it. Had started the long overdue research of migraine disease. As a result I was able to ask about making dietary changes “I wouldn’t bother” came the response. “What support is available to me?” There is none. It was brutally empowering to understand where I stood and that they couldn’t help me meet my needs. Leaving the door open for me to go elsewhere and meet them, and stay true to what I knew to be true. It was the lowest of lows but also the most empowered place too.

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