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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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Have you thought about taking the holistic approach and anti-inflammatory diet? or find a chiropractor that takes the holistic approach that can make manipulate your liver, kidneys to detox or detox foot soak? I’ve had an autoimmune disease for 48 yrs. And it is getting worse. I am trying the holistic approach now. I started anti-inflammatory diet plus no dairy and no refind sugar diet and I feel better in 2 1/2 weeks. Just a thought Good luck🤞
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1 ReactionHELLO TRACEE,
HUSBAND HAS NO IDEA WHAT I'M GOING THROUGH, SEES ME IN PAIN, NOTHING, NEVER MENTIONS IT.
I HAVE NO FAMILY AND FRIENDS??? CALLS ARE LESS AND I NEVER NEVER WEAR MY HEART ON MY SLEEVE.
WHAT IS THE NAME OF THE BOOK?
NICE MEETING YOU!
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2 Reactions@cwitton1 I thought you might like this article from the Autoimmune Association:
https://autoimmune.org/resource-center/diagnosis-tips/
And you’re right, many doctors don’t know or understand enough about autoimmune diseases. That’s partly because the diseases have similar symptoms and they are so vague that a doctor has trouble putting 2 and 2 together and coming up with something specific. And the subject of AI diseases is only lightly touched on in medical school because they are uncommon.
Try contacting one of these organizations for help: https://rarediseases.info.nih.gov/
https://rarediseases.org/
I would hate to see you give up! Will you continue looking for answers?
I’m not Tracee, but I know that The Medical Medium has a website through which books may be purchased.
I feel for you, because like with you, my spouse chose to turn a blind eye to my pain because he felt powerless to help. As my symptoms became worse, we wound up in couples counseling because of the resentment I felt. I would be doing my best to work around the house (can’t hold a job any more) while he sat and watched me, sometimes helping if I specifically asked him to help with a particular single task, only to have him complete that one thing and then return to sitting and watching me limp around the house, struggle to carry things, even with tears in my eyes for the pain. Now he’s finally anticipating my needs and helping with some things. He still needs to be asked with some obvious tasks, but at least I finally feel heard and seen. My family was the same, with my sisters accusing me of being a hypochondriac despite medical testing and Mayo diagnosis of neuropathy, CFS, Fibro, and Reynaud’s.
But there is hope for better. Don’t be afraid to ask for everything you’d like help with, to share what you’re feeling or what the doctors say you need help with. If necessary, take your spouse to a medical visit so the doctor can explain your ability level if you feel he doesn’t believe you. Do not allow yourself to be treated poorly because you might feel like your condition has made helping you a burden or too demanding (as I did) because he has a stressful career. After all, if your child had your condition, I doubt you would tell them to tolerate being ignored by their spouse? Remind him that you didn’t ask to have chronic pain, and while it is unfortunate, and not the life you planned, you deserve respect and to be treated better.
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4 Reactions@cwitton
I am so sorry you are going through this. I just finished dealing with a Doctor that is a freaking Moran. I had been seeing him at this time about 2 years and I went in for a follow-up and bloodwork results. So we're sitting there and he says " Your kidneys look good this time." I say what do you mean this time. He has the nerve to say well you've had kidney stage 3a for a couple of year's. I was really mad and asked him why in the f*** did you never tell me or send e to a specialist? There's more but I don't want to blow the page up. I had finally had enough of his shit and kicked him to the curb. I reported him to the head guy and he is still there treating patients. We are getting a lawyer because there is way more. He has caused me percent injuries to my ankles that is now also affecting my toes. I had a serious infection that I got in an aftercare and I kept telling him what kind of tests I needed done...never to get them. I was so sick I couldn't get out of bed. Thank God for the Gastro Doctor I asked to be referred too. She found the infection in 3 weeks. I have lost so much faith in Doctor's and the ER is a joke. I pray you get some relief. Look into some holistic stuff. I have found some with a little research to help a few of my autoimmune problems.
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5 ReactionsLike your stage 3 CKD, my friend and my brother in law both had an obvious abnormality on bloodwork that indicated possible leukemia, one for 2 years, one for 3 months, that was totally overlooked or ignored by their multiple Drs. I discovered my BILs problem while reviewing his patient portal. He is now referred to a hematologist and friend has been diagnosed with leukemia. I can’t tell you how often this happens! I encourage everyone to get copies of their lab and test results or sign up for the patient portal and check your own results. You may need help interpreting or need to research, but you’ll learn more about your health than you’ll learn from your Dr. unfortunately our health care system is stretched so thin that HCP don’t have time to explain so they may not even mention important things.
Get a medical dictionary and lab book and look for hi or low “flags” on lab results. Some borderline values may not be meaningful, but bigger discrepancies outside normal reference ranges should be questioned.
We must take a more active role in partnering with our HCPs to help ourselves live our best!
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4 ReactionsYou are strong for telling us. We need to listen. Thank you and I can absolutely relate-I am so sorry!!
I have straddled the elusive doctor- monster with my daughter, myself, and with my own career in practice!! Mono does terrifying things. What is more terrifying is a doctor who doesn’t care. For myself practicing in medicine, it’s gut wrenching to work with professionals lacking passion for seeking answers. The medical community should NOT harbor pride WHEN we do not know. Not if, but when. We need to practice, refer, research and apply- finish our jobs!!
To all the medical professionals reading this;
Let it sheds light that we never stop learning. We are never above someone else.
You have my support!!! I am sorry and I hope you find relief SOON!! ❤️
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4 ReactionsHello Becky, Thank You so much for the information.!
I speak with aPain Phycologist, she has tried get through to him but in his own mind he is never wrong. He says things like, NO ONE CAN HELP YOU ANYMORE!!!!!!!! I'M A Fighter but no one to fight WITH me. He does help with the house, dishes, puts body lotion on my legs, I can't bend.
Again, Thank You!
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1 ReactionI agree with most of what you said, except that I’m not completely done. Some things, yes, but I stii explore, I still research AND I STILL find answers to things I need to know.
I only gave up once. THAT was NOT the answer.
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1 ReactionHi, I hear you when you say you are DONE!!!! I have been there and go back there, but still seek out solutions from others as I'm sure you do too. However, it feels very definite and gives me a lot of relief to say "I'M DONE!!!!! What I am really saying is I am done for now!!!! It is very stressful to keep checking out sites for help, trying them and getting no results. More importantly it is supportive and hopeful reading that others have found some relief and we are not alone on this journey.
I like the idea of reading the Medical Medium I learned about today.
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3 Reactions