Tired of the gaslighting
I am done.
No more doctors. They’ve gaslit me, passed me off, placated me with unnecessary tests, tried detrimental drug therapies. No more “specialists” who pass you along to the next because it’s “not my job”. They straight up don’t believe anything I say. I am done. This journey that started in 1989 with a case of mononucleosis has ruined my life. I am done chasing answers and being mentally traumatized by doctors’ lack of empathy or concern. I am tired of reading my after visit notes and finding errors- things we never discussed or blatant lies about being examined. I am sick to death of being told it’s just anxiety manifesting or my brain tricking my body to make it *think*there’s pain when “there isn’t”. There is pain. A lot of pain, and I do not wonder at all why people with autoimmune disorders or chronic conditions- chronic pain patients, take unthinkable measures. News flash:NSAIDS don’t do squat for pain. They only wreck your kidneys and liver. What I have learned in the last 35 years is you can trust no one but yourself. Doctors are not there to help you. Doctors are there to make money and feel important about themselves. Doctors refuse to tell us, “I don’t know.” I’m tired, and it’s become more of a self preservation technique to just walk away. No more visits. No more medications. Whatever will be, will be. Call me a quitter. I don’t care. We were brought up to think if you’re sick, go to a doctor and they will help you get better. If your pain is new or gets worse, go to your doctor. They will figure out the cause. This is bs. No one’s going to help you. No one’s going to believe you. You will begin to question your sanity and eventually come to the conclusion that you’re on your own. The power dynamic in medicine is huge. They may have paid for an education, but I am not stupid and I know my body. This is me, finally defeated, jaded and hopeless. This is me accepting that this is how the rest of my life will be, forever. It’s not an exciting, rosy prospect. This is me, and I am done.
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I agree; think you should never give up on the search to find a supportive health professional as e.g., you'll need someone to prescribe drugs anyway? For example, before agreeing to any tests, use your past experience to ask a doctor to explain why the tests are part of a process to pursue a solution rather than just ordering them because they simply can rule things out or reflect standard protocol. I and others can empathize with your situation but IMO you need to be most aggressive in seeking out someone you can believe in on the basis that they can address and consider all the concerns you mention here, even if it is not exactly what you want to hear. I don't think you'll "be a quitter" just that you need to vent and maybe take a break? I can only encourage you as you pursue someone to help, you make sure you are not starting over but that they totally are aware of your journey and they have a perspective and vision that sees beyond that and is the basis for you to not only not give up, but have some hope and reason to push forward.
Mayo has had three chances. Three different very significant issues. No answers. I don’t know how they can all fit in that ginormous building when their egos take up all the space.
I have a pcp that’s pretty understanding for the most part. But I will only see her bc in this country you *have* to have a pcp. There’s nothing she can do regarding any of the “big” issues though, so she just rx my things like estradiol and pantoprazole.
i have great empathy for you. I am in Canada and my doctor wants to sit at this desk and phone in prescriptions. My former doctor referred me to my rheumatologist who is in another health district, she is absolutely great. This new family doctor will not work with her. I too have chronic pain from FM and right now the legs and neck are so bad, neuralgia and cramps that I am unable to sleep. I also have a torn rotator cuff and other complications. Because I could not take one medication ( I was losing my vision) he prescribed, he gave up on me. I go to physiotherapy and that is all that has really helped lately. I hope that may help you.
I’m really sorry you’re going through this too. There are so many of us who are not being heard.
They seem to just pass you to another doc or another MRI, CT, or Blood test but I have to tell them the results are in.
Exactly!
I'm in the medical field, and can appreciate your concerns. A lot of bad has happened in Medicine over the past 15-20 years, as hospitals starting buying up medical practices. The insurance companies call us " Covered Lives", and hospitals look at us as profit centers.
Physicans are now normally employed by corporations whose loyalty is to shareholders.
No incentive exists for patients to get well ( a healthy person does not usually spend as much $ as a sick one). Doctors are on tight schedules and subject to performance evaluations, which emphasize quantity of patients, not quality of care.
It's also true that the recent generations of physicians trained under systems that did not value physical exams or using scientific process to determine best course of care. Its now " Complaint= Test". Fatigue= CBC and TFT, iron studies. If nirmal, you are fine. ( we call that "Euboxic". All labs and tests checked off in EMR and normal.
Think about establishing with a Concierge practice, or at least one not owned by hospitals. That's your best chance of getting to bottom of your issues. But please don't give up.
I suspect your previous implants has everything to do with your constellation of autoimmune symptoms. Kudos to the MD that told you to get them removed!
@cwitton1 It's very brave of you to post your dilemma. I was diagnosed with an autoimmune disease in 2014 and had the same experiences you've had with trying to get relief and health back. I felt like I was getting the run around and no answers. I started to believe that medical professionals didn't really understand autoimmune diseases because if they actually understood, they'd have some solutions. But not only did they not have solutions, they continued to act like they had the answers - and that somehow I wasn't 'getting it' or being cooperative enough. That's what gaslighting feels like. For you to voice this is brave because it opens you up to more people who might want to encourage you to step back into the fray that has been so exasperating and expensive. Someone on this thread mentioned Medical Medium - I have been following food protocols in his books for over five years and have reduced my symptoms exponentially and radically. I am not on medications. The symptoms that were debilitating no longer are. I still struggle a bit, but I have a toehold on this now. I would still go to Mayo Clinic for 'serious and complex care' (I know, I know... as if autoimmune isn't serious or complex, lol) - but for autoimmune issues, my kitchen and specific food protocols are my healthcare. It doesn't sound half as powerful as it really is. And it sounds way easier than it really is; my family can tell you that. Healing from feeling let down by healthcare is another thing altogether, which is another/different conversation about bravery.