Tired of the gaslighting

Posted by cwitton1 @cwitton1, Jan 5 8:24am

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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Holy crow or cow or whatever expresses surprise and AWE. I know this post is a few months old, but since I am just seeing it now it is new to me. How much of what you have experienced has also been mine? Quite a bit. Here is a sample.I just saw a pain management dr this week. Brought my MRI's for my neck which is now at the herniated disc stage and told dr the only med that has helped my pain is Methadone. I have already doene the acupuncture, the physical theray, the chiropractic. I still have pain gauged at #10 for 5-10 days at a time that puts me in bed 24/7 -usually 2X a year. Because the pain is so severe I don't eat or drink and am unable to care for myself so need around the clock help bringing icepacks etc. That pain in my head, the doc said he can't help me with because it is not in his purview. It isn't in the neurologist's purview either. But, the pain doc does want to inject some steroids while I get radiation to guide him and a bit of dye put in my bloodstream too so he doesn't accidentally hit my spinal cord. Nope, I don't think I am doing that, thank you. So, I am going to die in pain because at age 77 I might become a Methadone junkie. It makes complete sense to me.

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@krisjb1

Holy crow or cow or whatever expresses surprise and AWE. I know this post is a few months old, but since I am just seeing it now it is new to me. How much of what you have experienced has also been mine? Quite a bit. Here is a sample.I just saw a pain management dr this week. Brought my MRI's for my neck which is now at the herniated disc stage and told dr the only med that has helped my pain is Methadone. I have already doene the acupuncture, the physical theray, the chiropractic. I still have pain gauged at #10 for 5-10 days at a time that puts me in bed 24/7 -usually 2X a year. Because the pain is so severe I don't eat or drink and am unable to care for myself so need around the clock help bringing icepacks etc. That pain in my head, the doc said he can't help me with because it is not in his purview. It isn't in the neurologist's purview either. But, the pain doc does want to inject some steroids while I get radiation to guide him and a bit of dye put in my bloodstream too so he doesn't accidentally hit my spinal cord. Nope, I don't think I am doing that, thank you. So, I am going to die in pain because at age 77 I might become a Methadone junkie. It makes complete sense to me.

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Maybe there’s something I don’t understand. The procedure you describe is well understood for severe Spinal Pain. The radiation is minimal and the dye isnt harmful. I had it deposited via a Bronchoscopy into the bottom corner of my lung so the doc could find the tumor when he made an incision from the outside. It exited via my urine which turned lovely shade of green. If your personal risk profile for the procedure exceeds your tolerance, then you of course have the freedom to refuse it.
I just don’t grasp your frustration. What do you want to happen that isn’t happening?

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@pb50

Maybe there’s something I don’t understand. The procedure you describe is well understood for severe Spinal Pain. The radiation is minimal and the dye isnt harmful. I had it deposited via a Bronchoscopy into the bottom corner of my lung so the doc could find the tumor when he made an incision from the outside. It exited via my urine which turned lovely shade of green. If your personal risk profile for the procedure exceeds your tolerance, then you of course have the freedom to refuse it.
I just don’t grasp your frustration. What do you want to happen that isn’t happening?

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If I had a lung tumor I might investigate and find that it is the only option or the best option at the very least. But I have been living with my pain as the cervical issues continue to worsen for at least 30 years and it is not life threatening as far as I know. It will probably get worse but I am already 77 so I don't have a lot of time left for it to become completely disabling. On the other hand as it has been described the procedure will have two potential threats-allergic reaction to the dye and also radiation. I have had too much exposure already. I grew up at a time when fluroscoping feet to get the right pair of shoes was the norm. So over the years the exposure adds up especially when you factor in mammogaphy and dental x-rays for nearly every visit since I was 3. The risk that the doctor mentioned of having a spinal headache is disturbing too. He didn't tell me how frequently that happens or what can be done when it does happen, but that is not something I even want to think about. Since I have some kidney issues and because they don't help anyway I am not interested in anything that includes Tylenol such as oxycodone. I have had prescriptions for it in the past and it doesn't do much . I just want the one med I know works. Since there is absolutely no chance of becoming hooked as I would need just a few tablets to ease my severe pain 2X annually there is no real reason for denial. I am not a person who has ever had addictions. I just need to ease my pain without a risky procedure.

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As the kids say today, you do you girl 🙂

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@astaingegerdm

I have had same experience as many of you- reading about my office visit on the portal that did not agree with what actually happened. Even at Mayo- thorough exam that did not happen.
My current internist has a better computer program and it actually agrees with what happened.
Electronic medical records were forced upon the health care providers by insurance companies that wanted control over what testing is allowed and what can be charged for a typical visit.
Before I retired from Pediatrics we had gone through a few versions of the electronic records. All bad. Time consuming.
The old handwritten notes only covered what was done and it was easier to follow.
These electronic records only benefit the insurance companies.

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I go in and read my Dr. notes. And I read the note that my orthopedist wrote. This is part of it. He said that their arthritis protocol was discussed with me, consisting of: low impact exercise, glucosamine/chondroitin sulfate/ASU, NSAIDS and weight loss. He said all of my questions were answered and I am pleased to move forward with the plan. None of this happened. I have other notes saying things that never happened. It is thoroughly disgusting. All I can say is , “ I have only just begun.” @rnlorena

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@mlorena
That’s terrible! Are you going to bring it up with them?

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Don’t even get me started! I too have found complete errors in the medical notes, and I called back immediately and demanded they correct them!
For pain, I have found that Accupuncture is amazing! Find an acupuncturist that’s classically trained in China and you have found a gold mine, my dear!

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@inminn

Penn, that is fantastic news! Good luck! Prayers sent your way for the best outcome possible!

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Hello!!!!!
Had the CT Scan, all the same nothing new BUT I am not supposed to read, do anything that stimulates the brain!!!!!!!!!!!!! Who can do that!!!!!!!!!!!!!!!!!!!!!!!! The pressure is SOOOOOOO bad!
Going tomorrow to Columbia Presbyterian Hospital about my horrible S.F.N, Can't take too much more.
Hope you are doing well!!!!!

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@penn

Hello!!!!!
Had the CT Scan, all the same nothing new BUT I am not supposed to read, do anything that stimulates the brain!!!!!!!!!!!!! Who can do that!!!!!!!!!!!!!!!!!!!!!!!! The pressure is SOOOOOOO bad!
Going tomorrow to Columbia Presbyterian Hospital about my horrible S.F.N, Can't take too much more.
Hope you are doing well!!!!!

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Penn, I’m so happy to hear you finally had that much-needed scan. Thank goodness they didn’t find anything serious! Good luck tomorrow! T’s and P’s!

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@dloos

It’s a shameful thing that the lab tests seem to be parceled out at a glacial pace.
I had a similar thing with B12 deficiency. I’d suffered for 8 months going to doctor appointments before a young Neurologist finally ordered the test! Extremely low B12! With supplementation I was back to myself in three months.
My regular GP acted flummoxed!
A simple test that most post menopausal women should routinely get took eight months and multiple doctors to prescribe.
Now, I always tell my friends to request the test. They are almost always too low, just like me.

Now, I’m dealing with post Covid(probably), and my ears and eyes are affected. I do have a doctor that is testing extensively to try to help me.

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I started taking B-12 when I first had shingles, for the pain. And, then I noticed that I could think better and so have continued the sublingual B-12 all these years. Besides hydration it is really worthwhile. I've had to add D3 due to low values and lung nodules and magnesium oxide for constipation.

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