I have dealt with female medical bias/gaslighting my entire life. It almost killed me twice (doctors refusing to recognize infections and not prescribing me medicine). I will check ot the link when I have the mental capacity. Thanks for sharing.
My main conditions are Myalgic Encephalomyelitis (translates to muscle pain and brain and spinal cord inflammation) and POTS (postural orthostatic tachycardia syndrome -a form of dysautonomia). I have a lot of other conditions related to these like autoimmunity, nerve damage and way too much to get into.
ME is a multi system neuro-immune disease that causes impaired immune function, crippling pain and fatigue, cognitive dysfunction , exertion intolerance ,nerve and muscle damage, mitochondrial dysfunction and all kinds of other symptoms. It is basically a "sister" illness to MS (multiple sclerosis) and long covid and other post infections/immune conditions . Roughly half of what we call "long covid" is ME.
POTS is a type of dysautonomia meaning dysfunction the in autonomic nervous system. The autonomic nervous system is our body's autopilot, and regulates blood pressure, temperature regulation, breathing rate, digestion and more. Basically all of the things that keep us alive that we do not have to think about.
With POTS patients have all of these symptoms of dysautonomia (and more)plus when we are upright either sitting or standing blood doesn't flow to our brains the way it does in healthy people (we also often are hypovolemic meaning we do not have enough blood volume). This can cause fainting or near fainting as well as exasperate other symptoms. The symptoms of the dysautonomia do not just go away when we lie down, we just don't faint.
I have had both of these conditions since childhood over 30 years ago. I now am stuck lying in bed for 23.5 out of 24 hours everyday. Otherwise I will go into syncope (fainting/near fainting).
These are complicated illnesses and there are very few specialist who treat us. Frankly a lot of specialists do not actually know enough about thee illnesses to treat patients and still see these conditions as psychological -they are not. Though we are in the millions doctors do not want to treat us and expect us to go from specialist to specialist as if we were healthy people. This is also very expensive in the United States.
Doctors treat complicated patients all the time. Doctors treat and are aware of rare diseases . MS for example is roughly 1/5 the patient population of ME. POTS is even more common . Doctors always know what MS is but no nothing about ME and often tell patients to do things that will harm them even further.
Despite the lack of funding there are decades of research for both ME and POTS. ME has been studied and found physiological abnormalities since at least the 1970's in the US (It was re named "chronic fatigue syndrome" in the 80's during mono outbreak) and since then it has been psychologized in the symptoms are all in the patient's head/the patient's fault despite decades of evidence proving that wrong.
It really is the medical scandal of the century but no one has really heard about it. It is estimated over 100 million people worldwide suffer from ME. Most patients are not diagnosed/misdiagnosed so that number is actually on the low side of estimation.
Both of the diseases have zero FDA approved treatments despite patients having quality of life scores similar to AIDS, cancer and congestive heart failure. This is not to discredit the suffering of people with these conditions it is just fact. Don't just take my word for it, feel free to use the internet to verify every claim I have made. It is backed by science.
We are very sick and suffer everyday and no doctor will even take us seriously even with confirmed abnormal test findings. My story is not unique-it is typical.
Roughly 70-80% of patients are female (for both ME and POTS estimates). If it were reversed and these diseases mostly affected males we would have treatments readily available.
Women have more autoimmune issues than men. Autoimmunity is linked to both ME and POTS -at least in the subgroup of patients I belong to. POTS can have other causes but is not really studied all that well .
I can't even get a doctor to take my symptoms seriously and treat those. Doctors do not care and even judge me poorly for being bed/homebound as if it is a choice I am making and not due ot decades of medical neglect. I am way too sick to keep trying to go to different doctors. No one will help me. They just don't care. I mean I am only a woman after all. Not a full fledged human being that deserves a decent quality of life(sarcasm).
Thanks for sharing.
I don't feel a need to research what you say independently, I trust what you're saying is true.
You have a good technical grasp on your condition. What you describe sounds hellish, all I can do is wish you well.
Only look at the contents of the link if you yourself are interested. It's literally just a landing page for a state government enquiry.
Youe life sounds dominated by the hardship you face. It would be harrowing. Do you experience small joys at times in there? I feel like I'm trying to change the subject and I suppose I am, but I'm interested
I always suggest that people verify my claims especially since they seem to go against what is considered normal or standard(for example exercise and any amount of small exertion in general harms us with ME. This is a bit counter intuitive as people seem to see exercise and beneficial if not curative).
Thank you. small joys is a good way of expressing it. But I also feel a lot of grief and trauma. Grief that I am too ill to play with my pets. Grief that I never had a chance at a successful life or to express my talents an hobbies. Grief and trauma watching how this illness effects my husband. Grief from being abandoned by my family (very common in disabled people in general).
I wasn't always as sick as I am but this illness is progressive and only gets worse as time goes by.
I do get small moments of joy-but they come with a price. One of the most insidious parts of this disease is enjoyment/anticipation can often cause debilitating crashes (this is known in the medical community as PEM/PESE. I highly recommend a video series from The Bateman Horne Center on Youtube regarding PEM for more information). Our immune systems cannot handle exertion be it mental, physical or simply experiencing joy. We pay dearly for these things.
We also cannot do things that most people can to cope with the stress of out illnesses or the stress of life. I cannot go for a walk, exercise or even listen to music or watch tv at times. I cannot visit friends and socialize. I cannot take up a hobby or any sort of activity.
I am on the severe/very severe spectrum of the illness but even those with the "mild" classification struggle to do these things and they always come with a price.
I spend a lot of my time in a quiet dark room because I cannot handle sensory inputs(lights sounds etc). It is like solitary confinement though no crime has been committed.
Video 1 from Bateman Horne regarding PEM. There are 7 videos in this series.
That's a good suggestion. Grief and trauma are very human. Can you tell me about your pets? What kind of animals are they and what are their names?
We have 6 guinea pigs. 2 are "rescues"/abandoned. We started with Oreo (m) and Nutmeg(f). Oreo was misgendered and we thought we were getting two females. OOPS!
Nutmeg had 3 babies Squeaky and Nougat and Loki (Loki passed away last year).
The two rescue piggies are named Lucky(m) and Tilly (f). Our males are neutered so no more surprise pregnancies.
6 piggies seems like a lot and it is but it's also not much more work than having 4 (we also have hired family members to come to our home once a week and help us with the cleaning in general and of the cages to make sure they are well taken care of). Guinea pigs are herd animals and having the two extra "rescue" piggies has had a positive effect on all the piggies.
Maybe I will post pictures of them here on Hive on this account or my main when I am feeling better. They are cute hilarious little animals.
For now I must rest. Thanks for the conversation. I really appreciate it. ❤️🦄
Thank you very much, that means a lot. Animals bring so much joy into our homes. I have had pet rabbits in the past and was really surprised at first how unique and individual each one can be, if given the space and freedom. Hilarious and cute is how I would describe them too!
Please tag me if you do post pet photos on your other account.
Yes take your rest, I really ought to do the same. You're welcome, I appreciate it likewise! Have a good one