Bias, medical gaslighting, and advocacy

[SweetWithSour]

I wanted to share my story with you and hope it helps you see you are not alone, the importance of listening to your body, and how challenging navigating the medical field can be.

I've been diagnosed with FM a little over 20 years now I believe. Things were going fairly smoothly with my Healthcare team. They believed in FM, wanted to help, and was willing to try some medication trials to see if we could find the right one. Then things changed when guidelines changes, turning to policy change, turning into regulation changes, and turning into law changes.

I saw bias in how I was perceived, encountered medical gaslighting, and learned how important it is to listen to your body and advocate for yourself! Because of my persistence I have been diagnosed with tumor-induced osteomalacia last week.

I do have a podcast on Spotify, Audible, and iHeart radio called The Sweet With the Sour. It will go into a bit more detail around the medical bias, gaslighting and the need for advocacy. Please know I'm not trying to self promote here. I think it is a vitally import topic!

 

[PANOWLCHAP]

I WAS DX WITH FM IN THE 90'S EXPERIENCED COMPLETE REJECTION FROM DOCTORS INCLUDING THE ONE THAT DX ME. I MOVED AND FOUND A DOCTOR THAT BELIVED. MOVED AGAIN FOUND A BELIEVER, THEN A NON-BELIVER. AFTER A YELLING MATCH THIS DOCTOR DX ME WITH POLYMAYALGIA RHEUMATICA. HE WAS NOT DOING TREATMENT RIGHT SO I FOUND ONE THAT DID. I ALSO FOUND A RHEUMATOLGIST THAT TREATS BOTH. MY CURRENT DOCTORS BELIEVE AND HAVED TRIED TO KEEP MY PAIN LEVELS DOWN. TODAY I HAVE MILD [4-5-6] PAIN LEVELS AND CAN FUNCITION WITH PAIN MEDICATION. ABOUT A WEEK AGO NOTHING WORKED TO BRING DOWN MY PAIN . I ALSO HAVE OTHER MEDICAL ISSUES.

 

[SweetWithSour]

Finding the right medical team is so valuable and important! I'm so glad you have your team that are doing what they can to keep you being functional. I'm sorry you had a week last week and struggled through trying to manage it. I hope you are feeling better and doing all your self care routines to push past the flair.

 

[SweetWithSour]

I do have a podcast on Spotify, Audible, and iHeart radio called The Sweet With the Sour

Today's episode I share about my rare disorder Tumor-induced osteomalacia and how it has impacted my last 3-4 years. I was diagnosed a few weeks ago and have my PET Scan and Endocrinology Consult at the end of the week.

 

[SweetWithSour]

If you do make your way to my podcast, I openly appreciate all constructive feedback to help me improve in sharing my story. To show we are not alone!

 

[SweetWithSour]

Todays episode digs deeper about medical gaslighting. I share the AWFUL experience with an endocrinologist for a pretty urgent root canal.

I have had so many instances in the healthcare system of bias and/or gaslighting. It's sad, and something I think many of can think of their own experiences.

 

[SweetWithSour]

endocrinologist

Sorry for typo endodontist

 

[Auriel]

bias and/or gaslighting. I think many of can think of their own experiences.

YES! , this , right there

 

[SweetWithSour]

I'm sorry you experienced that! Sometimes people suck. The good thing is not all do.

 

[Badger]

I shall check out the podcast, it can be shocking how bad some medical professionals bedside manner is, if only they knew the effect it has. Atb

 

[SweetWithSour]

if only they knew the effect it has

Such truth. I understand fibromyalgia is difficult, there are sooooooo many symptoms, it sometimes feels like wack-a-mole. I have a firm belief that, even the ones who make stupid comments, they want to help. It can be very frustrating for them when they can't. However, that doesn't excuse the mistakes because of a bias, whether it is conscious or subconscious. Those in the medical field are held to a higher standard to suspend judgment.

 

[Auriel]

it can be shocking how bad some medical professionals bedside manner is,

100% I've come out of dr's offices and home from hospital feeling incredibly ashamed from how I've been treated and spoken too (also feeling ashamed from hearing other people being spoke to disgustingly too) it's not ok, we're vunerable when we go in these places we really DON'T need extras, sometimes drs are in caring roles not because they actually care; they could have been pushed into it by controlling parents, it could have been expected of them as a parent already had that career (and it was expected) or they could be in it for the financial reasons? Not all care professions care (That's a quite nasty fact I had to learn along the way) ps it's nice to have you back badger (you popping into my head yesterday)

 

[SweetWithSour]

Not all care professions care (That's a quite nasty fact I had to learn along the way)

You are correct and it is sad and true. I'm sure each of us have our own stories and moments. The bad should be weeded out, the uneducated informed.

I really have been thinking about pulling together a CME (continuing medical education) accredited course on bias, and gaslighting chronic pain patients. I also know their is bias on race, gender, and sexual orientation. I've not seen it from the chronic pain side. I just remember doing ones that focused on drug diversion and pain medicine seeking behaviors. I think it is a very important topic. It greatly has an impact on the patients health, mentally, physically, emotionally and logically. The ignorance that they have a lot of power in their words, and actions, that reaffirm deepen and create more painful scars

 

[sunkacola]

When I have been treated badly at a medical establishment, I have gone to the internet and left them a bad review everywhere that it is possible to leave one. I never exaggerate, only tell the facts and how it made me feel.

I recommend this practice, because I know that one of these reviews I left got dozens of thumb's up points from others, indicating that people were reading it and taking it into consideration when looking for a place to go.

These doctors are in business, like everyone else, and anything that harms their business will eventually be noticed. It may not change how they do things, but at least it warns others not to go there. I know that I check the online reviews before I go to a new medical professional of any kind. I don't necessarily believe all of them but if there's a preponderance of really bad reviews, I won't go to that person.

Recently I made an appointment at a practice that had five different doctors, and they asked me which one I wanted. I told them that I specifically did not want doctor "x" because they had so many terrible reviews online. If enough people do that, this kind of thing does get back to the doctor, and to the head of the practice.

 

[Badger]

@Auriel that's very true, we're vulnerable and it can be an awful experience we don't forget. @sunkacola that's a good idea speaking up in reviews. If we don't hold professionals to account they'll continue on in the same vein. I've answered them back at times, or verbally complained after spotting an unfair letter on their screen, but had not taken it as far as a complaint with the practice manager. If it happens in future they are likely to receive a polite yet pointed answer. I remember a GP on British TV saying that his pet hate was lack of bed manners. He felt in some cases the brighter kids end up in professions like healthcare which very much become 'just a job' to them.