Betty Reese: You poor thang…it sounds like a lifetime of intense pain!

Yes but thankfully I have wonderful people in my corner and have finally assembled a great team of doctors that actually listen. Most doctors have no real concept of what chronic pain is actually like so it is very hard for them to relate even when it is their specialty. they don't understand the long term mental, emotional, and social impacts it has on people. I have spent a lot of time helping my doctors understand so they can better help other patients. I learned long ago that chronic illness & rare disease patients must become their own advocates and teachers with their doctors because often we know much more about the disease then they do since we live with it and there is not enough hours in any day for them to read all of the scientific. literature on every possible disease they treat.

Ok but it’s a male doctor trying to explain to his female patient how her body should respond to something. She would know how her body would respond and he’s trying to tell her she’s wrong.

But it's his job. If she didn't want his opinion she shouldn't've gone. He might have thought her side effects were related to something else.

Mars are Non-Binary (uses Fey/Fem pronouns) and you'd be surprised by how little most Doctors know about treatment for Trans people. Very often they can't even find a doctor, or get blocked by a gatekeeping transphobic Dr, so research and more research into things such as HRT. And yes that can get into self medicating due to no other options. When the alternative is living with crippling dysphoria you try what works for you...and there's a very supportive peer network out there now. I suspect here, fey was in ER for something unrelated and the Dr fell back to "it's the HRT, you have to stop" Otherwise know as the trans broken arm syndrome. You also see this a lot where Drs dismiss a patient as a women, as obese, etc. when there's something actually wrong.

You always have other options, you just choose not to see them. Do you seriously think that googling and reading a handful of studies makes you an expert? First you have to learn HOW to even read a study, then how to determine if it's reliable (and for that you need enough knowledge on the subject and related subjects). I come across people like you all of the time, you are so naive and oblivious to that you are literally killing people with YOUR god complex.

HRT are gender transforming hormones.

WROOOOONG! "Hormone Replacement Therapy". Giving you what you lack naturally for example because menopause or infertility or just shortage or imbalance.

Nope, not wrong. Besides, a fairie named Mars are trans (male to non binary female) so no uterus in sight.

That may well be true but are also given to women to deal with health issues driven by menopause or pre-menopausal issues and should definitely be taken only as prescribed by a doctor.

So she shouldn't be on them in the first place then.

She's trans sweetie. yes she should.

Not without a prescription from a doctor that have met her IRL.

You sound like someone who listens to the strange things some patients say. Are you medical?

I'm not an MD, let's just say that I'm in a field where I come across very very VERY many Google experts that tell me I've been brainwashed and/or bought by Soros.

i wouldn't have been approved for SSI if i hadn't done the legwork to research ehlers-danlos so i could point out very clearly to multiple doctors why it was very likely that i had it. yes, there are a lot of people who think because they have a couple of symptoms in common with what WebMD listed, they have some rare condition. but please don't lump people who've done the work in with them. if someone can quote info from studies AND provide the studies, they've got some knowledge under their belt.

Learn how science works.

you seem to brush all patients with the same brush and won't recognize a patient expert like myself. I've read the medical studies, I know how to interpret both the bloodwork and the symptoms. I make a great team with doctors once they see past the "little old lady". We have uncovered a complex of systemic illnesses together and I'm no longer bedridden. But dr. had to be open minded. You sound like you've made up your mind already.

You think you do, that is not the same as you do.

So I'm a "Google expert" because I knew I was in pain even when my doctor told me I wasn't? How asinine can you be?!? I am educated. I have a degree. AND I've educated doctors about my conditions because they had never read a single paper on CFS/ME or Fibromyalgia, even though incidence of these conditions are increasing. I have actual medical diagnoses for my conditions but only AFTER I became an expert and advocated for my own health. How dare you insinuate that people without an MD can't possibly understand science or that we "rarely finish high school." It seems like you are the one lacking education. The fact is, chronic illnesses are often missed or ignored by doctors because doctors are not educated enough to understand or recognize them. If patient do not educate and advocate they often never get a diagnosis nor the help they need!

Exactly. Tons of nurses were on the news refusing to take the vaccine, but I don't think I saw a single doctor.

for a lot of us, there's no alternative. and spoilers, if a women tells you you're mansplaining, maybe listen next time.

Spoiler: according to some women, anything a man says is "mansplaining."

Listen to what? Uneducated persons opinions?