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.

@jmp1234

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

Jump to this post

I went with sublingual spray and one tiny bottle was $60.

REPLY
@jmp1234

Also, are your transplant team members good with medical cannabis from a licensed dispensary. I assume you are a patient? Ty again

Jump to this post

I do not have a transplant team? But yes, every doctor I’ve seen does not have a problem with cannabis. In fact, I was recently told that cannabis is my only option for pain relief. I do have an issue with that, due to some other medications I am on, and not really liking to be “stoned” for a day because I do want to be productive. But sometimes, the minimal, short lived relief is worth it, even for 10 minutes. In my opinion, it doesn’t take away the pain. But you care less about it.

REPLY

I am so sorry you are walking away. I was gaslight by my pc's when told them I had foamy urine and wanted my kidney's checked. They refused for a bit but I persisted asking for tests. They reluctantly did and found that I was excreting a lot of protein. I was referred to a nephrologist and am in stage 1 CKD.

I certainly understand your feelings. I wish you could find great dr.'s. I have great endocrinology, rheumatology and nephrologist dr.'s and pa's. I have been lucky.

Best of luck to you

Judy

REPLY
@cwitton1

I do not have a transplant team? But yes, every doctor I’ve seen does not have a problem with cannabis. In fact, I was recently told that cannabis is my only option for pain relief. I do have an issue with that, due to some other medications I am on, and not really liking to be “stoned” for a day because I do want to be productive. But sometimes, the minimal, short lived relief is worth it, even for 10 minutes. In my opinion, it doesn’t take away the pain. But you care less about it.

Jump to this post

Well put! Ty

REPLY
@cwitton1

I do not have a transplant team? But yes, every doctor I’ve seen does not have a problem with cannabis. In fact, I was recently told that cannabis is my only option for pain relief. I do have an issue with that, due to some other medications I am on, and not really liking to be “stoned” for a day because I do want to be productive. But sometimes, the minimal, short lived relief is worth it, even for 10 minutes. In my opinion, it doesn’t take away the pain. But you care less about it.

Jump to this post

Mos def not a cure all or universal fix. But it helps. And help is what we all seek. Ty

REPLY
@jkm54

I am so sorry you are walking away. I was gaslight by my pc's when told them I had foamy urine and wanted my kidney's checked. They refused for a bit but I persisted asking for tests. They reluctantly did and found that I was excreting a lot of protein. I was referred to a nephrologist and am in stage 1 CKD.

I certainly understand your feelings. I wish you could find great dr.'s. I have great endocrinology, rheumatology and nephrologist dr.'s and pa's. I have been lucky.

Best of luck to you

Judy

Jump to this post

I get conflicting advice. There is Stage 3 (a and b) CKD in my chart? But when sent to nephrology I was told “everything is fine.” So which is it, who put it there, and what’s the truth? Yet another thing I just have to forget about and move on.

REPLY

I hope someone finds help for you - and quickly !

I went through something similar but only for 2 years of being told it might be the flu or it might be in my head.
Then one brilliant "rebel" doctor tested me for everything and referred me to another brilliant rebel doctor and he was brave enough to give me 2 medicines for their "off-label" benefits and I started recovering.

I hope there are doctors left in this world who are brilliant and brave. I have friends and relatives who are doctors but they retired when the government saddled them with so much paperwork that they had little time left to see patients.

PS: I didn't know what 'gaslighting' was. I read your post to find out. Thanks and I wish you all the best !

Peggy

REPLY
@dlydailyhope

I can totally relate with where you are right now! Everything you said I have experienced, too. You are right, you are your best advocate and know your body best. I, too, have gone to doctors for many years trying to get help for my pain and declining health. They tell you, especially women, that it is in your head so they can just prescribe you anxiety/depression medication and send you away. I have also seen after care notes that document things were reviewed and discussed with me when they weren’t at all! Fraudulent record keeping! I have fired a couple doctors who would not help or listen to my symptoms or who put in my record “hypochondriasis” when all I wanted was answers and help to feel better. I do feel better now, not 100%, but better after 7 years of seeking answers and not settling until I got help. It is a lot of work, $$$, and time but it is our lives on the line. After all of the runaround, I was finally diagnosed by different doctors) with the following (in order): iron deficiency, small fiber neuropathy through punch biopsy, hearing loss, cervical and lumbar severe spinal stenosis, degenerative disc disease, radiculopathy, osteoarthritis, alopecia areata, thyroid autoantibodies in bloodwork and inflammation, cervical spondylitic myelopathy (spinal cord compression making it hard to walk and not drop things plus had daily headaches), thyroid nodule/Hashimoto's thyroiditis/micro cancer/hypothyroid, breast implant illness (implants removed), and gastritis and esophagitis (waiting for endoscopy biopsy results). I, too, had a really bad case of mononucleosis as a teen (now in my 50s) and understand EBV and other viruses can cause many health problems later in life. I am now on 100 mcg levothyroxine for my thyroid, 40 mg Fluoxetine (Prozac) for anxiety/depression (chronic pain), and now 20 mg Omeprazole for gastritis. Many other symptoms on my long list have reduced or gone away completely. There is hope!

Jump to this post

After reading your live, I felt like you were talking about me. I have everything you have except for the breast implants. In addition I have had and probably still do PMR and GCA. I am 81 and I, too had mono as a teenager with a relapse, which kept me in the hospital for three weeks. I do not know what to do. At this point. My arthritis is extremely difficult and painful. I live in Florida and I’m having a difficult time finding doctors that can help me. it is hard to get around now I use a walker and need to shoulder replacements. Where do you live? I also have head problems with lots of noise. I am looking to take an MRI of my head.

REPLY
@marilynredder2367

After reading your live, I felt like you were talking about me. I have everything you have except for the breast implants. In addition I have had and probably still do PMR and GCA. I am 81 and I, too had mono as a teenager with a relapse, which kept me in the hospital for three weeks. I do not know what to do. At this point. My arthritis is extremely difficult and painful. I live in Florida and I’m having a difficult time finding doctors that can help me. it is hard to get around now I use a walker and need to shoulder replacements. Where do you live? I also have head problems with lots of noise. I am looking to take an MRI of my head.

Jump to this post

I am in Rhode Island. It would be good to have updated MRIs of head, cervical spine and lumbar spine to see if there are any disc/vertebrae/pinched nerve issues that add to your pain. Arthritis is painful but when you add nerve pain on top of it, it is unbearable. I was on Cymbalta/Duloxetine for osteoarthritis and nerve pain and it helped. I also take over the counter alpha Lipoic acid and Acetyl l carnitine for nerve pain which helps. You may benefit from spinal injections, Salonpas lidocaine pain patches, capsaicin pain creams, and gentle stretching/strengthening exercises (like Miranda Esmonde White’s Classical Stretch/Essentrics). I have taken fish oil, glucosamine chondroitin and collagen supplements which have helped some, too. I wish you luck getting some answers!

REPLY
@larak

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.

Jump to this post

More power to you! Keep fighting the good fight for yourself and not only recognizing the need to maintain (or maybe even improve) these areas, but getting after it. When you find a good functional medicine doctor, do you mind checking back in on Connect to share your experience?

REPLY
Please sign in or register to post a reply.