‘Medical Gaslighting’
You may have heard this term before, maybe even more so recently. Maybe it’s happened to you, it’s not something new, but rather something that’s being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know you’re feeling and instead try to convince you they’re caused by something else—or even that you’re imagining them.
It can sometimes be tricky to identify when it’s happening, sometimes it’s a clear refusal to treat or acknowledge a patient’s symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesn’t always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked “well what did they say?” You may not be able to recount a time that they ever outright told you that you’re over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.
After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.
Which leads me to why I’m speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.
Talking about a tough situation doesn’t make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I don’t want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldn’t speak, I’d instantly get emotional, and I would be filled with fear that I’d be dismissed and get sicker all over again. I wouldn’t want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term ‘medical gaslighting’ meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.
I’ve come a long way from that period, and I’ve used it to learn how to fiercely advocate for myself. To know what type of care I’m entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like you’ve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.
I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you can’t always wait to see your specialist or main doctor. Sometimes, we require emergency care…
My chest is heavy as I’m writing this, I didn’t realize how hard this was going to be. Regardless…
I’m going to share about what happened a couple of nights ago when we had to go to emergency.
I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a ‘pinched nerve’ type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasn’t sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a ‘story’ post to say I wasn’t feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didn’t match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.
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I sat there weighing my options:
Go only if it gets worse (potentially too late if it’s a precursor to a neurological event like a stroke or aneurysm) OR…
Go right now while I can still speak clearly for myself and don’t require emergent complex care
When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that can’t wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldn’t know the seriousness of the event myself. I also couldn’t risk going to sleep and waiting to see my doctor. My thought was: I’ll never forgive myself if I don’t go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So that’s what I did, I grabbed my hospital ‘go bag’ and all of my supplies needed to speak for myself if I’m unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something we’ve done hundreds of time. Knowing that it can either go extremely well, or….. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, I’ve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since it’s a very rural hospital.
We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since I’m the only one there. High five!
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I was triaged right away, my husband who is my primary caregiver couldn’t be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, it’s not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.
I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one around… for my own safety I have to know that if I’d go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when I’m at higher risk of crisis. Since I can’t be treated with an epi-pen and there’s conflicting conditions, it’s not something I can choose to leave out.
She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.
I laughed and replied that I get it, my bad! I then proceeded to explain WHY it’s necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.
She cut me off mid sentence and said “I REALLY don’t care” and stormed out of the room. Leaving my husband and I to stand there and wonder… is this how the rest of the night will be?
He instantly reassured me “well, she’s just one person! The doctor will be nice” and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.
The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says “so she can’t speak for herself? You’re here because she can’t speak on her own? You’re here to speak on her behalf?”
Not that I need to defend this, but yes. My husband literally is there for when I can’t speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. It’s happened many many times, and it’s the most terrifying thing to happen to a person. Especially when surrounded by strangers.
I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why it’s essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.
Rather than asking me more about it or if it’s happened before, she replied by saying “so then we can do that for you. He doesn’t have to be here, if anything changes we are capable of knowing if you can’t speak. Or do you think we aren’t capable?”
I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we haven’t even begun to speak about WHY I am there. I didn’t feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition that’s already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.
I didn’t want to argue, so to avoid putting fuel on the fire, I calmly explained that I’m not questioning their capability. It’s just if I’m alone in a room, and it happens within seconds, in the event I’m unable to speak, logically I can’t ask for help. I can’t call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.
What happened next is what truly caught me off guard and I knew I wasn’t going to be able to stay there should I absolutely need to.
I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said “can I tell you why I’m here?” She threw down her clipboard and replied “I HOPE you know why you’re here, they woke me up in the middle of the night for this!”
In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didn’t warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I won’t let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.
At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied “so you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!” (No where did I say I took anything for my headache) “okay so then your headache wasn’t bad enough to take a Tylenol AND it went away?”
No, I just don’t typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come.
My husband patiently waited to interject and let her know that I’ve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldn’t think of coming to the hospital unless it’s an EMERGENCY.
She didn’t seem to find it very concerning, instead she asked me “well why isn’t THAT in your chart then, if you’ve had a stroke, wouldn’t you include it in here?”
I was caught off guard and stunned, so he replied for me. “It happened before her adrenaline was controlled, before she was diagnosed” I always include my most current conditions, because a lot has happened and I can’t fit them all on one page, I don’t think I could fit them in one book let alone a page.
I went along with the touch your nose then my finger game, walked a straight line, and ‘passed the exam’.
She then began to finally explain that they don’t do labs at night, she can’t take my blood, she can’t do a scan, they don’t do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an ‘emergency’. Okay, see ya!
But then ….“even if I DID do a scan, it won’t tell me anything because you’re not symptomatic anymore”
Me: “okay, so… if there’s nothing we can do, do I just go home?”
Doctor: “well, we can keep you to observe you to see if it happens again”
Me: “okay and if it does…, that’s when we would do tests and a scan?”
Doctor: “well maybe, MAYBE in the morning”
Me: “so if it DOES happen again, what would you do?”
Doctor: “well like I said we will just monitor you and see if it does”
(Still unclear as to what that will achieve if they’re unable to do blood work or imaging)
Doctor: “I mean you’re fine now, your neuro exam is fine, you’re not having the symptoms anymore”
Me: “okay so I can just go home then? If there’s nothing, I can monitor myself and go to a hospital if it changes?”
At this point she’s said I’m fine more than once, made me feel I’m there for nothing, that there’s nothing they can do at their facility to look further into it. It’s not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.
The doctor then says “okay, well I’ll give you two some time to decide what YOU would like to do”
My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldn’t have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up.
When things changed…
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain I’d feel safer being at home and will go to a bigger hospital if the symptoms return.
She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current ‘condition’. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though that’s EXACTLY why I came in the first place.
The entire time I had been there, I was made to question why I was there. That I wasn’t an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.
The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same ‘neurological’ event that brought me in can happen again and again until POW! ‘The big one’ happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.
Stunned, confused, and curious, I asked: “so…. If I stayed, and you monitor me, and even if the ‘big one’ happens, what would you do?”
Doctor: “well we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldn’t send my stroke patients there! If I had a choice, I’d send them to the civic” (by which she means a larger teaching hospital in a different province) but since it’s a different province, I can’t do that. So I’d have to send you to the other hospital”
Me: “okay… well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridge”
Doctor: “if you stay here we can monitor you and maybe do a scan in the morning, I see you’re allergic to ‘dye’ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ‘just do it’
Me: “ummm, you can’t just ‘do it’ when someone has a life threatening allergy to iodine. This is is one of the reasons I’m safer at home. If you were to administer iodine even by error, you can’t give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurse”
Out of curiosity, I then asked “what if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldn’t see anything anyway right?”
*crickets* ugh.. ugh… well… not necessarily
Like, I’m sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when I’m walking out the door, that’s when we get berated about the danger of the situation? Suddenly I’m a ‘stroke patient’? Suddenly everything changes? No. I won’t be roped into this ping pong match. I won’t continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one who’s doing something wrong.
The aftermath…
Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, I’m going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when there’s something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasn’t deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldn’t help but leave feeling more confused and scared then when I first came.
That confusion was followed by anger, and outrage. WHY did this happen again?
I’m nice, I’m calm, I’m organized, I provide all of the facts, I am a great advocate, I have logic, I don’t quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense
I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didn’t she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided I’m going to sleep.
We made a plan as to what we would do in the event of the ‘what if’s’. My husband stayed up all night doing checks, and we made it to morning.
I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldn’t help but wonder what we would have done had my current condition been more unstable.
This isn’t the first time something like this has happened to us, and I’m certain it won’t be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.
Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized it’s most likely not the eye that was larger that’s the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said it’s normal for eyes to go larger, but it’s NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.
I wish I had a clear explanation as to what you can do in the event that this happens, but it’s very situational. One major thing I want to make clear:
Never feel pressured to stay somewhere that you are not comfortable.
Never feel you have to do anything you aren’t comfortable doing
Never feel you don’t have the option to get a second opinion
Never feel that you aren’t entitled to leave and seek help elsewhere
If it’s unsafe to leave, but you aren’t comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.
The reason I’m sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if we’ve done something wrong when seeking medical attention
Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you aren’t feeling heard or safe, but can’t leave that hospital, please reach out to the patient advocacy number for that hospital and get help.
I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm it’s not just ‘in my head’. But if you don’t, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please don’t let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But I’m not letting that stop me from getting the care that I require to keep me safe and THRIVING.
I have no answers just yet about why my pupils did this, and what’s going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!
I imagine I’ll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.
By sharing this, it’s my therapeutic release of letting it go and not giving it power over me. My illness isn’t going away, so I need to be confident and able to speak when I can for myself.
I hope in some small way if something similar has happened to you, you’re reminded that it’s not your fault. You are deserving and worthy of kindness, patience, and answers.
I haven’t shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.
I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didn’t know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
Stay phabulous my phriends, Image may be NSFW.
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Image may be NSFW.
Clik here to view.