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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

covidstinks2023 | @covidstinks2023 | Jan 6 7:07am

P.S. COVID can reignite the Epstein Barr virus. Blessings.....

cwitton1 | @cwitton1 | Jan 6 7:15am

In reply to @covidstinks2023 "P.S. COVID can reignite the Epstein Barr virus. Blessings....." + (show)

I still always test positive for EBV.

dlydailyhope | @dlydailyhope | Jan 6 7:16am

In reply to @dlydailyhope "P. S. You are right about NSAIDs not really helping with all types of pain. I..." + (show)

P.S.S. I did have 3 surgeries 2022-2023 (ACDF of my cervical spine at C5C6, thyroid right lobectomy, and breast implant removal). I also had a D&C in 2019 due to severe menstruation and polyps causing iron deficiency. These surgeries helped address some of the significant symptoms I was experiencing. At first, they needed to rule out MS, Lupus, etc. which scared me. My mom had Lupus, RA, Hashimoto’s, Diabetes, Heart Disease, etc.

Lara K | @larak | Jan 6 9:16am

In reply to @rwinney "Hey there, @cwitton1. I'm with you and believe 100% wholeheartedly that your pain exists. I believe..." + (show)

@rwinney

Hey there, @cwitton1. I'm with you and believe 100% wholeheartedly that your pain exists. I believe what you feel and how entirely frustrated you are with your circumstances and the cards you've been dealt. And, I believe you are exhausted, drained and in physical and emotional distress as a whole. What I don't believe however is that you are a quitter. Yes, I believe you want to quit, I believe you feel hopeless and at the end of your rope for the umpteenth thousandth time, BUT I believe that you've got moxie and the tenacity to look deeper into how might you be your best self-advocate.

You say, "No more visits. No more medications." Pulling back, honestly, may not be such a bad thing, providing certain meds and visits aren't medically necessary. I understand and felt the same way after realizing my reliance on doctors to intervene and find ways of helping my chronic pain and all that spiraled from it was just making symptoms worse. Once I began the healing process of grief and loss, and worked on acceptance of chronic pain conditions, I was able to see that it was more my responsibility of learning lifestyle changes which included stress-management, physical conditioning, behavioral and emotional therapies and how to be an active participant in my own pain-management plan. I want hope for you because I remember how bad it sucked to not feel hopeful.

What are your thoughts? Am I off the mark? Do you still feel there are stones left unturned medically, as in acute issues that are being overlooked, or chronic issues that you believe have been misdiagnosed? What do you think still needs to be done to improve your quality of life?

The sad reality is that even the best doctors in the world may not be able to reinvent the wheel and help us any more than their specialty lane allows. Process of elimination, try this med, that procedure or treatment. I agree with some of your points and held my own resentment and disappointment for a while based on failed treatments and ineffective meds, even for Mayo denying me to be evaluated. Rejection is disheartening and lonely. Some doctors lack of bedside manor and don't go the extra mile for their patients, but there are those that do. Here's one doc that I think is exceptional - Mayo's Dr. Sletten. His video on chronic pain may be worth a watch. I'm hoping that you find some validation.

Dr. Christopher Sletten - Central Sensitization Syndrome -

Finding Connect to vent your innermost frustrations and get it off your chest, hopefully proved therapeutic. We all need to do that once in a while. I read that you are only 50, work and have a hubby and kids! All wonderful reasons to keep hope alive and not give up despite your obstacles. Connect is here to support, encourage, share and problem-solve together. Hoping tomorrow is a better day for you. Will you get back to me with thoughts on the video or what you see your next steps to be?

Jump to this post

I am thinking of switching to a functional medicine doctor and diving deep into a diet to relieve inflammation and lose weight. I'm also thinking of HRT to help with my CV health and energy levels.

Will it solve all my problems? No. But I, too, am sick of the abuse.

It does not matter how many labs are significantly off. It does not matter how many diagnosed symptoms you accumulate. Doctors do not listen.

Heck, I have my whole genome sequenced and HLA-B is mess, with many feameshift, stop-gained, insertion, & deletion variants, including several known pathological variants for Behcet's. I have a 5.1 cm ascending aortic aneurysm, diagnosed dry eye, mouth lesions (having biopsy this year), joint pain, ANA repeatedly 1:1280, etc. etc.

I've been through 4 rheumatologists and they were all lazy and condescending.

My aneurysm doc is sending me to a rheumatologist who specializes in vasculitis, appt. is in April. That's my last hurrah with rheumatology. That is a specialty that really wants a diagnosis handed to them on a silver platter.

jmp1234 | @jmp1234 | Jan 6 10:20am

Medical cannabis from a licensed dispensary helped me a lot since 2016. Hth

cwitton1 | @cwitton1 | Jan 6 11:00am

In reply to @jmp1234 "Medical cannabis from a licensed dispensary helped me a lot since 2016. Hth" + (show)

I tried it but don’t want to vape. The cost of dispensaries is outrageous. I am so glad mj is legal in Mn now.

Rachel, Volunteer Mentor | @rwinney | Jan 6 11:05am

In reply to @larak "I am thinking of switching to a functional medicine doctor and diving deep into a diet..." + (show)

I love the idea of trying a functional medicine doctor for you. When I was in the PRC -pain rehabilitation program, Dr Sletten referred to "Demo Day" from HGTV's Chip and Joanna Gaines Fixer Upper show, and how sometimes we have to look at what we are doing because if it's not working we may have to rip it all down and try to rebuild. As you've experienced and are seeing in this thread, patients get frustrated with doctors and conventional Western medicine and maybe that's where demo day has to come in. If it ain't working, change it! I think most of us are intelligent enough to realize that we're not going to cure ourselves but what we do hope for is some plateau and stability - a way to manage our overall health and well-being -physically, emotionally behaviorally and chemically. Good luck to you, my friend. Have you begun the search yet for a functional medical Dr.?

jmp1234 | @jmp1234 | Jan 6 11:14am

In reply to @cwitton1 "I tried it but don’t want to vape. The cost of dispensaries is outrageous. I am..." + (show)

Ty for your feedback. Florida is a legal medical state for cannabis. I also don't vape. My thc based and rso used to cost about 30 to 40 dollars monthly. Both were separate purchases. What type of route did you use for your medical cannabis other than vape or smoke? Ty again

Lara K | @larak | Jan 6 11:15am

In reply to @rwinney "I love the idea of trying a functional medicine doctor for you. When I was in..." + (show)

Not yet. But I'm just outside of Boston. It shouldn't be too hard to find someone.

I agree that it is, in part, avoiding things getting worse. I need to maintain my strength, balance, and flexibility. I need to maintain my endurance, my cognitive abilities, etc.

I want to improve all of the above, of course. But not losing function from here is crucial. And I don't think conventional medicine is going to help much with that.