Image created using ideogram This post is not medical advice. Trigger warning: Medical misogyny and neglect.
It only took 35 years or so for me to find a doctor willing to treat me (illness onset in childhood). No, I do not have rare conditions. Quite common in fact. These conditions are not new, either. They are female dominant though so are usually dismissed as psych (psychological/psychiatric illnesses are valid and should be treated like any other illnesses. I just don't have them).
I am still in shock. This should be the standard of care. It should not be unique to find a doctor willing to treat a patient so severe suffering so much they are homebound/bedbound . But here we are.
I am used to having to be my own doctor. I mean this literally. My current med regimen are meds I had to research and educate my PCP on. I am not a doctor. I have no rare diseases. The patient should not have to educate their provider (Not only is this free labor but I have to pay a lot of money for dr appointments living in the US) on common illnesses that are treatable.
This doctor is fantastic. He listens and uses (gasp) critical thinking. He is one of the only doctors in the world who understands my main conditions and co morbidities and is willing to provide actual medical treatment for medical conditions.
This should be the norm. It is not. If you are a woman with a chronic illness(s) or have female dominant illnesses you are fucked by the medical system. Not only do you not get medical care but most of the advice doctors give is actually harmful.
I will be trying new meds. First we are focusing on autonomic dysfunction which is effecting every aspect of my life. Dysautonomia is a serious debilating disease most doctors just shrug off. I mean if only effects literally everything in the body from heart rate, blood pressure, digestion, temperature regulation, immune response etc. All the things most people never think about I have to monitor constantly.If I don't I faint and get sicker. If I am injured from fainting I am lectured to "be more careful" by the same doctors who refuse to treat me.
The Dr is also running the same tests I have been begging other doctors to run for DECADES. He is also looking at why my inflammatory markers have been high (and ignored) for decades as this is somewhat unusual for those with illnesses like mine. Not impossible just not typical. In fact in many folks with my cluster of illnesses inflammatory markers are low, too low, which also indicated physiological abnormalities. Doctors don't care about that because most of us do not have penises. Even those who do, get a taste of the medical misogyny simply for having female dominant illnesses.
We will likely find something else, something treatable with these tests. Folks with auto immune and neuro immune issues often have. more than one condition. Much like those with allergies often have asthma and vice versa.
Despite decades of abnormal tests including inflammatory markers, white blood cells and other anomalies no one has ever taken me seriously. I am guilty of being ill while being female, so I must be crazy right? Compare that to my husband, if anything is off slightly he gets immediate treatments or further tests. He's in pain, he gets pain meds no questions asked same with every other man I know.
The women I know with chronic illnesses are treated just like I am. I am not special. Treating women (or not treating us)like this is the standard of care in medicine. My average everyday pain is a 7-8. I get Tylenol (despite evidence of physical dysfunction like torn muscles, ligaments, tendons, bone erosion, nerve damage and many other indisputable findings)
Oh and let's not forget doctors are still diagnosing literal hysteria in droves, they just keep changing the name. Despite it being well known that autoimmune diseases are mostly female dominant we are still told our symptoms are all in our heads or we are being "dramatic".
I am hopeful but trying to not be too hopeful. I should be starting new meds next week.
First target: Autonomic dysfunction. Then energy ( including but not limited to mitochondrial dysfunction), sleep, and pain.
Pro tip: If your patient's sleeping heart rate is in the 60- 70's consistently (on HR lowering meds)something is very very wrong. It's not anxiety.
I will try to make a log on meds, dosage and other things as part of my journey. Maybe it will help someone else.
If you are in a situation where doctors don't believe you and refuse to treat you please know this: I believe you. Your struggles are real. You are valid and you deserve treatments and respect.
❤️🦄