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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kayabbott | @kayabbott | Feb 16 7:54am

Positive thinking, hydration, sleep, avoiding stress, support system, and diet/exercise are some of the things important to healing. It would be good to look up Medical Medium on Wiki or other sources before spending money on his products; he has no background in science or medicine, just conversing with angels. My brother believed his pancreatic cancer could be healed by eating sesame seeds and other online cures, although in his case chemo would have been worse (the "cures" did give him something to focus on for a while).

dand63 | @dandoss63 | Feb 16 8:33am

Not sure if this would help but there is a book, I recently read by Dr. Cynthia Li, called, "Brave New Medicine". She is a medical doctor who developed CFS and had to learn how to treat herself through all sorts of natural therapies. Might be worth checking out. You are correct in that most doctors don't have a clue on all of these auto-immune type illnesses. It is up to us to deal with everything. I have changed my diet and all of my activities and even had to quit my job. I know that diet is key - stay away from sugars (all except what may be found in low glycemic fruits such as berries). No processed foods, no seed oils and no grains, especially wheat (gluten).

savanah10 | @savanah10 | Feb 17 3:35pm

I don't know what autoimmune issues you are dealing with and even if I did, I know that each of our bodies responds to disease and treatments differently. Having said that, here is what I have found helpful: I have worked with two acupuncturists- one was not good- one was. I have worked with the one I found helpful for several years. My pain levels have decreased and my energy increased. I have treatments monthly or every other month. When I have skipped treatment three to five months in a row, the pain returns in full force. So I work to keep my appointments scheduled regularly. I find Curcumin supplements helpful and have found what I eat and drink can also make a difference. I used to drink sugar laden, caffeinated soft drinks daily. I have had some degree of pain decrease and energy increase by ending this habit. I wish you the very best as you continue your journey to find answers that fit you.

penn | @penn | Feb 18 4:51pm

What do you mean by Gaslighting? I know what means but medically?

dianag1000 | @dianag1000 | Feb 19 8:32am

I agree. Try a naturopathic doctor / functional medicine practitioner. Total game changer, as far as the experience.

Becky, Volunteer Mentor | @becsbuddy | Feb 19 8:04pm

In reply to @penn "What do you mean by Gaslighting? I know what means but medically?" + (show)

@penn. I found this explanation, but there is so much more! Examples, people who do it, and more. Just google “gaslighting”.
Gaslighting is a colloquialism, loosely defined as manipulating someone into questioning their own perception of reality. The expression, which derives from the title of the 1944 film Gaslight, became popular in the mid-2010s. Merriam Webster cites deception of one's memory, perception of reality, or mental stability.

sommerreign | @sommerreign | Feb 19 9:13pm

I don’t know who you saw but until I went to Mayo in Rochester, 6 doctors had no clue to what was causing so much disability!
Mayo found out with 1 test, that happened to be the treatment for a specific condition!
If I got better right away, they knew how to get it under control, and they did ….
Steroids ~ Drs don’t tell you make you gain a lot of weight & it disrupts your adrenal glands, along with the other damage you mention.
I found a doctor in Illinois that knew how to follow Mayos protocol & I began working again 5-12 hour days 🎉
When I moved to another state, I had to start ALL over from day 1 with already tried & failed meds & procedures!!
Who would think you’d have to start all OVER again, when something is keeping you employed & living your life in minimal discomfort?
Each new Dr wants their own trail of tests & procedures.
Maybe it’s b/c there’s a War on pain relieving meds, even for TRULY documented internal damage reported by Mayo!
All I needed was a nerve block that would last 6 months without medicines. So twice a year to stay out of a wheelchair!
So I felt your pain.
This is medicine today,
Everybody is a specialist & we have to go to each one like the walking wounded of the civil war, and I think it’s cruel & should be illegal.
I’d rather have 5 years pain free to work, play, travel & enjoy my family than 10 years limited to a wheelchair, & all alone in PAIN -
Maybe move to a better place. The better the hospitals in an area. the more access to better pain management doctors & diagnosticians who CAN give you an answer & begin treatment.

hollie | @hollie | Feb 19 11:52pm

In reply to @cwitton1 "Ope. Forgot to mention the dysautonomia. Syncope, inappropriate sinus tachycardia, orthostatic hypotension. Mayos solution was to..." + (show)

Have you ever been referred to a work up for POTS ?

Becky, Volunteer Mentor | @becsbuddy | Feb 20 3:57pm

In reply to @hollie "Have you ever been referred to a work up for POTS ?" + (show)

@hollie Welcome to Mayo Clinic Connect! I’m glad you found the site. Do you have POTS and is it managed well?

difrnt1 | @difrnt1 | Feb 23 7:26am

In reply to @cwitton1 "I still always test positive for EBV." + (show)

I too was going to mention EBV I never knew I had it until the COVID vaccine caused a flare. I felt so horrible for so long and tried 5 drs. within 3 years. Finally asked for the test. Dr said I have chronic EBV which explained many things over my life span. Unfortunately our system doesn't focus nor treat EBV itself but as you describe push you from pillar to post. The UK has more literature on the subject but also falls short. I unfortunately like you once believed it was about helping and had a spinal fusion. Huge mistake(for me) Our medical do good things however many are waking up to how the system works. Not sure when it took this turn but it's so very sad. Saying you are not alone isn't enough and oh how you are not alone there are many of us...I'm with and hear you but real change needs to happen especially for our children and generations to come.