• Kathleen Burnard

Day 9: Mental Health Week

Technically today is Day 10, so you're getting two posts for the price of one (kind of...yesterday was a travel day, so posting wasn't going to happen). It would be easy to list the same mental health resources that get recycled every time there's some sort of mental health event, but I don't think I'm going to go that route this time around. Instead, I want to talk about some of the ways that mental health is wrapped up in EDS.


Day 10 is about Coping and Grieving, so I'll try to stay away from those concepts as much as possible.


Let's just jump right in, shall we? Let's talk about Medical Gaslighting.


Medical gaslighting is when doctors dismiss, invalidate, or misdiagnose patients' symptoms as minor or nonexistent; say that symptoms are just due to stress, hormones, anxiety, weight, etc., when they aren't; or suggest that a patient is exaggerating or that their symptoms are somehow their own fault. This is something that happens disproportionately to women, BIPOC, LGBTQ+, the young or elderly, poor people, and disabled/chronically ill people. I do not think it is unreasonable to say that it is an epidemic in the world of EDS.


Gather 'round, friends, and I'll tell you a tale of medical gaslighting 101.

Kathleen in a hospital room, wearing an oversized black sweatshirt, light pink shorts, and tan hospital socks. She is sleepily giving a thumbs up to the camera.

The year was 2018 and my neurologist had just prescribed a new (to me) medication to hopefully treat my Essential Tremor. So, as with every new medication I begin, I made sure everything else in my life was stable so that it was the only changed variable, let my parents know that I was taking something new that night, and I took it at bedtime as prescribed. Almost exactly 2 hours later, I woke to to the room tilting side-to-side, cartoon shipwreck style, and one phrase repeating over and over again in my head: get yourself to the ground. So I did. Then I sort of crawl-dragged myself into the hallway with my head down and my eyes closed, trying to feel of the stairs so I didn't fall, because every time I tried to open my eyes and look around the horrible tilting started again. I tried to call out for help, but couldn't. Thankfully, I had the wherewithal to grab my phone on the way down, so I was able to call my father that way and it didn't matter if I was able to speak or not- the phone call was enough to raise the appropriate red flags. He and my mother came out into the hallway, saw me on the floor, and he promptly called 911.


When the paramedics arrived and pieced the story together (between my labored one syllable responses, my father's information, and the medical ID on my phone- get a medical ID if you don't have one yet), everyone was in agreement that this was an adverse medication reaction. That's certainly what it felt like. Once we got to the hospital, all of the nurses, PA, and doctors were also in agreement- adverse medication reaction, you are no longer allowed to take this drug. It's not technically an allergic reaction, but it's a neurological drug so a neurological reaction isn't out of the question, and this is pretty darn bad and scary, so we're putting it under "allergies" in your file. Do not take it again.


Yes, got it. I don't want to go through that again, understood.


They gave me some meds that helped the vertigo and nausea stop, I was able to talk again. Things were looking up. And then a few hours later (after having been there for nearly 10 hours total) when those were wearing off, they gave me a different set of meds. Those meds DID NOT HELP. The symptoms started to come back pretty fast.


And then there was a shift change.


A new PA came in to discharge me. My family and I were like, "whoa there, hang on a minute, I'm experiencing the same symptoms as when I came in and they're starting to ramp up again. I don't think this last round of meds is doing the same job as the first one. I'm nauseated and dizzy and the room is tilting. It's getting harder to keep my eyes open."


And then.


This PA.


In this setting in which EVERY SINGLE PERSON had said "oh yes, this is 100% absolutely an adverse medication reaction, and a bad one at that."


This fucking PA had the goddamn nerve to look me right in the face and say, "well, that happens sometimes...with anxiety."


I'm sorry, WHAT. EXCUSE THE FUCK OUT OF ME.


They would not listen to anything I had to say. It took my father stepping in to say, "she knows the difference" in order for me to get another round of the medication that had worked in the first place. Think about that for a second. Nothing I said was good enough. But my father assuring them that it was real, that it wasn't anxiety, that I was experiencing actual physical symptoms worthy of emergency treatment- that was the seal of approval that was needed.


The next day I read through the visit notes, written by that last PA. They started, "Patient presented as a 29 year old female with anxiety."

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It took years to get anxiety (for which I had never received a diagnosis) out of my medical file.


I have approximately 200 stories like that. Maybe that's an extreme example, but there are so many more of regular appointments where my pain was dismissed as stress. I was told to just get more sleep. Actually, I was told that at an appointment today that I was hoping would help figure out some bizarre and severe vision problems I've been experiencing. Sometimes there will be stretches where it happens at every single appointment.


With EDS it starts young. Children's very real joint pain is dismissed as growing pains. They're told everyone is experiencing the same thing. Many people with EDS, myself included, are resistant to local anesthetic. That includes novocaine. That means getting dental or orthodontic work done as a child without any pain relief, because their tears are dismissed as fear, since "everyone is scared of the dentist." Kids in pain are taught from an upsettingly young age that their pain or discomfort is inconvenient for the adults around them. If they bring it up too often, if they ask to go to the school nurse too often, if they cry about it too often, they aren't met with empathy. They're met with annoyance. Impatience. They're told they're being overly sensitive or that they just want attention. And you know what? If a kid hears that enough times, they'll believe it. And the next time they hurt, they'll shut up about it.


That's a great way to mess with a person's mental health and their relationship with pain. If someone has a condition like EDS, all that does is set them up for a very confusing life of pain scales and medical trauma.


Instances of gaslighting and traumatic procedures can build over time. When I look back on my life pre-diagnosis, I see I whole bunch of people (mostly men) asking me if I could feel places that were supposed to be completely numb, and then when I said yes, shoving needles into me anyway. I see people (again, mostly men) ignoring me when I tell them I only have one accessible vein in one arm for an IV, and then taking 45 minutes to poke, dig, and wiggle around various sized needles in various veins before just going with the vein I told them to use in the first place. I see so, so many doctors blaming me for my symptoms (if they believe I have symptoms at all), because if I were doing everything right, I wouldn't be in this mess. I see myself crying in an infinite number of parking lots. I've lost count of the number of times I've heard the word "anxiety" used to explain away legitimate symptoms.


Anxiety. I was going to end there, but no, now we need to talk about anxiety. Because mental health is physical health and anxiety disorders are important. However. The next doctor I hear telling a 22 year old girl that her resting heart rate never goes below 88 because of ANXIETY is getting punched in the face. Okay, maybe not literally punched, but I will visualize it really hard.


Some people really do have anxiety. There are so many different forms of anxiety and every single one of the are valid. But seeing a young woman and dismissing all of her symptoms as anxiety just because she's a young woman is unethical and dangerous. Some of the most common EDS comorbidities, like postural orthostatic tachycardia syndrome, POTS (or other forms of dysautonomia like orthostatic hypotension), or mast cell activation syndrome, MCAS, for example, share symptoms with anxiety like sweating, shaking, trouble breathing, brain fog, elevated heart rate, etc. That's why it's so important to have a doctor who actually, you know, does work to figure out what may be going on with a patient rather than just deciding based on visuals or demographics. One of the worst things that can happen when someone is on their way to getting an EDS diagnosis (whether they know it or not) is running into a doctor who doesn't feel like doing this work and sends them straight to psych. Once this happens, it can be tremendously difficult to convince anyone that you don't belong there. How do you prove you aren't anxious or depressed, while seeking treatment for the very real physical symptoms you're experiencing, while being told those symptoms are all psychological and nothing is actually wrong with you? It's a disaster that can take years to sort out. Oh yeah, while you feel like crap because you're sick!


Which is not to say that mental health care for people with EDS isn't important or shouldn't be prioritized. It is and it should be. Just look at all that stuff we have to sort through, therapy is probably a good choice. It's just that mental health care shouldn't take the place of all other appropriate health care. Ideally, they should work together to provide the most comprehensive care possible, especially if psych meds are involved. Again, Day 10's topic is Coping/Grieving, which might highlight the need for mental healthcare more.


Well. This post may have gotten away from me a little bit. The conclusion is really that if someone says they're in pain, believe them. Especially if that person is a child. Especially especially if that person has told you more than once. And if you're a doctor, for the love of all that is good in the world, don't you dare gaslight a patient. Just don't do it.