Feeling devastated, confused, and furious after yet another experience with #medicalgaslighting. I'm hoping I can harness that fury to find a way to get myself to a proper #dysautonomia specialist. But for now, I'm just trying to let my body and spirit recover a bit - that means lots of walks, Netflix, therapy, and of course lots of conversations with my support system, especially you all & Aaron. ❤️😔
I finally had my long-awaited tilt table test yesterday, and here's what happened:
My heart rate increased 46 bpm from my resting heart rate when they did the 20 minute tilt 📈 I was nauseous and woozy the whole time. Then when they administered the isoproterenol, my heart rate promptly skyrocketed another 50-something bpm and I fainted. I woke up dry-heaving with the taste of tums (the only thing I had consumed in the past 6 hours) and stomach bile in my mouth. I was drenched in sweat and evidently pale. My ears were ringing and my visual snow (which is normally transparent) was almost opaque.
When the doctor found my husband he told him, "So, her heart rate skyrocketed and it stayed high, and we made her faint! She doesn't have POTS!"
Aaron said, "I'm sorry, did you say she DOES have POTS?"
The doctor said "Nope, it's not POTS. She should exercise more often."
And that's it. I had a positive test result, but I wasn't given the closure or the clarity that a POTS diagnosis would have offered.
On a regular basis, I experience:
nausea,
chronic headaches,
migraine attacks,
visual disturbances,
lightheadedness & tachy upon standing and while showering,
shakiness,
IBS,
parasomnia,
impaired motor skills,
brain fog,
sensory sensitivity,
excessive thirst & urination,
swollen red feet,
variable body temp & blood pressure.
I came back positive on my holter monitor and showed a hyperadrenergic response upon standing in my blood work. I've now fainted 5 times. How many more signs & symptoms do I have to demonstrate before I can get the diagnosis and closure I need?
Thank you to all who have talked me through this and reached out in the last 24 hours. ❤️ You truly have no idea how much your support means
Don't get me wrong, I love green smoothies, turmeric & ginger, essential oils, probiotics, supplements, and yoga as much as anyone. 🥬🧘🏼♀️💊 While these tools don't cure me, they do help.
And I recognize the good intentions behind the unsolicited medical advice. People I love and respect offer me unsolicited medical advice because they struggle to accept that my illness really is chronic. I get it, it's hard to watch someone you love suffer without jumping in to try to help. And that denial - that belief that there's got to be an easy fix - is a normal part of the grieving process.
But I'm setting firm boundaries around my medical treatment and choices, ESPECIALLY around my migraine treatment. 🙅🏼♀️ I will politely decline any unsolicited medical advice, unless it's from a member of my medical team or someone with the same symptoms/diagnosis as me. I will no longer feel compelled to justify my treatment plan every time I'm offered unsolicited medical advice.
It's not that the advice is objectively bad, it's just that it isn't what I need. It's good intentions wasted. As Aaron put it, "Instead of assuming they know how to help, they should ask how they can help." 💯
If you repost, please credit me in the caption. ☺️
[Alt-text: White background with black text that says, "The problem is not that unsolicited medical advice is always bad advice. It's just that, "But have you tried ___ ?" feels a bit patronizing when you've already tried just about everything."]
#migraineadvocate
#mightywithmigraine #mindfulmigraine #chronicmigraine #believespoonies #potssyndrome #potsielife #potsawareness #potsiegirl #spondylitis #ankylosingspondylitis #anxietysupport #mentalillnessrecovery #spooniesisterhood #spooniebrothers #spooniesupport #spooniestrong #chronicillness #chronicpain #chronicallybadass #autoimmunearthritis #autoimmunedisease #butyoudontlooksick #mecfswarrior #fibromyalgiawarrior #healthyboundaries #unsolicitedadvice
Nothing like a belated Christmas with my parents, sister, brother in-law, and nieces in Texas to brighten up the middle of January. 🥰🌞⭐ I'm so blessed to have a family who loves me unconditionally and always knows all the best gluten free pizza restaurants in town, especially the ones with fun live music. 🍕🎶
[Alt-text: a woman in jeans and a white and cranberry color-blocked shirt and long straight hair dances to a cover of "Here Comes the Sun" with a small, blonde five-year old girl in a puffy blue coat.] #christmasintexas #belatedchristmas #spoonielove #spooniesupport #chronicchristmas #migraineadvocate #glutenintolerance #glutenfreelife #spoonieholiday
Are you familiar with the concept of medical gaslighting? Gaslighting, according to Wikipedia, is "a form of psychological manipulation in which a person seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, or sanity." 🔥
Medical gaslighting, therefore, refers to that manipulation in a medical context. Sometimes the manipulation is intentional, and other times it occurs accidentally, as the result of the doctor's implicit biases. Either way, it can be profoundly traumatic.
We're vulnerable to gaslighting because we trust our doctors' authority. First, patients might be manipulated into doubting the more subjective aspects of our illnesses (like pain and fatigue) then later, after repeated incidents of gaslighting, we often start to doubt even the objective, measurable aspects of our illnesses like hair-loss, heart-rate, swelling, dislocations, etc.
If you repost, please credit me in the caption and tag me in the photo. Thanks! ☺️
[Alt-text: 1 - White background with black text that says, "When we say Medical Gaslighting, we're referring to the way that many doctors deny the existence of our symptoms until we begin to to question our entire reality." 2 - White background with black text that says, "You know you're a survivor of Medical Gaslighting when even the most concrete, objective facts about you body feel uncertain and up for debate."]
#believespoonies #medicalgaslighting #medicaltrauma #chronicmigraine #migraineadvocate #mightywithmigraine #butyoudontlooksick #disabilityadvocacy #disabilityawareness #potssyndrome #potsielife #potsiestrong #dysautonomiaawareness #dysautonomiawarrior #fibromyalgiawarrior #fibrostrong #mecfswarrior #millionsmissing #notenoughforme #chroniclymedisease #neverthelesswepersist #intersectionalfeminism #invisibledisability #invisibleillness
Wanted to do an introduction for some new followers. ☺️
🙋🏼♀️ Hi! I'm Abbey. I'm a migraineur, an autoimmune warrior, and [probably, diagnosis pending...] a POTSy. I'm also a former long distance runner (something I miss dearly), a wife, an animal lover, a Harry Potter fan, a future licensed professional counselor, a psychology student @ The University of Kansas by day, and a wanna-be disability advocate & graphic designer by night.
I started this account in August, days after getting my autoimmune diagnosis. I was relieved to finally have an explanation for some of my formerly mysterious symptoms, but I also had a LOT of grief, fear, and post-traumatic stress to unpack after years of being told it was all in my head. I came here in search of a safe place to work through it all, with hopes of meeting some chronically ill friends. I discovered a FIERCE, KIND, and EMPATHETIC community of resilient spoonies advocating for themselves and others, and they welcomed me with open arms. They quickly became some of my dearest friends, and I decided to join them in the fight for a more accessible, healthier, accepting world.
Tell me more about yourself! ☺️ When did you decide to join the spoonie Instafam, and what have you found within the disability/chronic illness community that surprised you?? 🥄
[A photo of a white woman with long red hair in a knee-length floral dress and blue sandals sitting on a bench on a college campus. There are green bushes, purple flowers, and an old limestone campus building behind her.]
#migrainewarrior #chronicmigraine #migraineadvocate #mightywithmigraine #undifferentiatedspondylitis #spondylitis #ankylosingspondylitis #autoimmunearthritis #autoimmunedisease #dysautonomia #potssyndrome #potsawareness #potsiegirl #invisibleillness #invisibledisability #rockchalkjayhawk #universityofkansas #disabilityadvocacy #disabledandcute #notjustaheadache #butyoudontlooksick #medicalgaslighting #psychologymajor #futurecounselor
I watch my fellow invisible illness advocacy accounts' explosive growth 📈 and I wonder... Is this the decade that everything changes for us? It feels like our movement is catching fire. 🙌👏🔥
Women, transgender folks, and non-binary folks are disproportionately affected by invisible chronic illness, and I'd wager that this is largely due to the long history of labeling anyone with a uterus who is chronically ill as "hysterical." 🙄
While hysteria is no longer in the DSM, suspicions of hysteria still prevent us from getting the medical care we deserve. They also prevent illnesses like ME/CFS, fibromyalgia, chronic Lyme, and AMPS from getting the research funding they so badly need.
It's 2020, but I still have to bring my husband with me to doctors appointments if I want my account of my own symptoms to be believed. That needs to change. It's time.
💜 If you repost this image, please tag me in the image and credit me in your caption. Thanks! ☺️
[Alt-text: White background with black text that says in small font, "IT'S 2020 FOR GOODNESS' SAKE." Below that in large black font, it says "Why are sick women still treated with so much suspicion and doubt?". Below the text there's an illustration of five women wearing various shades of pink, red, and white.]
#believespoonies #neverthelesswepersist #butyoudontlooksick #invisibledisability #invisibleillness #disabilityadvocacy #migraineadvocate #mightywithmigraine #fibromyalgiawarrior #fibromyalgiafighter #mecfswarrior #millionsmissing #notenoughforme #chroniclymedisease #lymedisease #potssyndrome #potsawareness #dysautonomiawarrior #intersectionalfeminism #medicalgaslighting #medicaltrauma #ibsawareness
Waiting and hoping for a medical test result to come back positive is a strange and icky feeling. And it's kinda taboo too, even here in the spoonie community. But we've all been there, haven't we? 💉👩⚕️
When you're feeling healthy, a positive medical test is often really scary... That positive is how you learn that you're sick. 😷
And when you're chronically ill and you think you already have all the diagnoses you need, an unexpected positive test result is EXTRA scary. It means there's something new going wrong. 😱
But when you're chronically ill and still in search of a diagnosis (which so many of us are, unfortunately!) you already know you're sick, you just don't know why. A positive test result is your golden ticket out of "medically unexplained" and "all in your head" and into a magical world where suddenly you are believed... You are diagnosable. You are treatable. You aren't going mad. ✊
I'm right in the thick of the process of diagnosing hyperadrenergic POTS, and the waiting is hard. It's strange, because everyone who knows anything about POTS thinks I'm practically a textbook case, and every test we've thrown at it so far supports this, yet I'll be waiting in suspense until the day I have my tilt table test and my cardiologist confirms what I already know in my heart.... That I've been a member of the #feetupclub all along. 🧂
[Alt-text: white background, with an illustration of a vial of blood on the left. On the right, black text reads, "I wish I wanted the test results to come back normal.]
#believespoonies #butyoudontlooksick #itsnotallinyourhead #medicalgaslighting #medicaltrauma #potssyndrome #dysautonomiawarrior #dysautonomiaawareness #potsawareness #potsielife #potssyndromeawareness #potsie #migrainewarrior #chronicmigraine #chronicheadache #saltyspoonie #potsiestrong #potsiegirl #lupusfighter #lymedisease #sjogrenssyndrome #multiplesclerosis #fibromyalgiawarrior
