Raw conversation about medical gaslighting
This is an update thread, but I am not happy with my mood and wanted to start a different conversation with it. For those of you who don't recognize my username, I'm still fighting for a diagnosis (any REAL diagnosis) and fighting for testing. My doctors are making me fight every step of the way.
Today I had a virtual appointment with a GP to request supplemental tests in advance of my upcoming neurology appointment. I wanted the autoimmune panel. The appointment was supposed to last 20 minutes but ended up only lasting 5. I was denied every request. I had my lists with me, stated my purpose, my suspicions and reasoning, and my requests.
He immediately turned the conversation around, berated me for speaking with people who have been through the same journey and symptoms to gain from their experiences, and warned me against 'googling' for information... which I didn't do and don't. Then he started asking pointed questions about mental health and depression, like he wanted to write the entire experience off as an episode of depression. He kept repeating himself as I explained that yes, I am feeling stress because I'm not being heard. Yes, I am anxious because my symptoms keep being ignored. No, I am not depressed. As a matter of fact, I'm angry. I'm angry that you're not listening to me and I keep having to wait just to be brushed aside. Finally, he gave up on the depression and asked if I had any other questions.
I expected it, but am still in absolute disbelief. And I just don't get it. Why go into the medical field if you don't want to help others?
And I read my after visit summary, and he didn't even give the correct information in the summary, basically wrote it to make me sound like someone suffering from mental health. I just can't even today.
Sorry for the rant.
I would love your story, your emotion, your you. 💜💜
Good morning, I completely get where you are coming from. I am having the same issue. My Doctor wrote in my report that I am in therapy. I am not. I was 2 years ago because I was having a hard time being away from my family. I am in the Army so I was stationed away for 3 years. I took some anxiety meds then but haven't taken them in over 2 years. He also wrote that he suspects anxiety. Then I get a message in my portal that just stated MRI results are back and are normal. No phone call or anything. I know the MRI should not be "normal" because I have a benign brain tumor so how can that be normal. It's so frustrating. I have a list of 33 different symptoms I have been dealing with and all he put in the MRI referral was tingling in my feet as the reason for it. I hope you get the answers you have been searching for. At this point any answers are better than no answers.
I hope the same for you! It's so very frustrating to just keep getting the placating statements and doctors that don't care about actually helping find a truth, any truth. And of course the fact that I was diagnosed with fibromyalgia was brought up, and that's such a lazy 'diagnosis' I can't stand it. Going to see the neurologist in two weeks and if I don't get the response I deserve I will be asking for a referral to our local research hospital. I'm so very over coloring inside the lines and will never stop advocating for myself.
I'm wishing progress and strength for you! So much love and respect 💜
I completely understand this post, had to change Neurologist, because same thing happened to me. Especially in the summary of notes, so freaking frustrating. Rant, vent, that's what we are here for , YOU! That's why I love this forum, website, always supportive!!
thank you for this! I am hoping for the best but expecting the worst at my next neurologist appointment. But I will break up with him in a heartbeat if I feel like he's not listening or taking me seriously.
I am by nature a very positive person, I see the good and I believe in the best. But every once in a while, someone will trigger that fire in me, and it's better to vent and rant in a supporting community rather than an outburst directly to the person who lit the flame. I hope that my most recent experience was simply a lack of knowledge and discomfort in stepping outside of his wheelhouse. And I hope that he took my comments and will grow.
It's people like you that keep me coming back to this community and I really appreciate it! So much love and respect to you 💜
I completely feel you. They actually wanted to shock my brain I mean literally. To discuss some sort of depressive horrible episode that if they shocked my brain, I would only lose some memories, but not all of them. If you don’t meet the exact criteria, then it’s something else that they can’t find. It can be a train wreck. I remember lots and lots of tears and lots of anger as well, my husband was starting to believe them because everyone was saying the same thing. You know they used to die by a hot tub test? And let put you in the hot tub I suppose to see reacted to the humidity in the heat a quick for me. Don’t give up hope so humiliated so many times panic attack to see anyone else because I already knew the answer they would give me. And if you start going to other doctors, they just go off of what the last doctor said. I finally decided to leave the state and start over. I didn’t have luck there either so I turned right around and found someone else and there it was, finally an answer. I had about 45 lesions the year before, but they didn’t tell me about and once I got to the one who gave me a diagnosis, it had already risen to 90. Was finally treated with medication in the last two years. I haven’t gotten one more lesion. There are symptoms that suck and everyone’s experience is different. For me, I just had to make the decision to stop being afraid. Stop what anyone said. I just dug in and kept going to get an answer and for me it worked. It hasn’t been fun sometime. I almost wish I hadn’t gotten an answer. But, at least now they can slow it down and I understand that it wasn’t in my head, excuse the pun. It was real. I wasn’t crazy. Hang in there God bless you!
thank you so much for sharing your story, it sounds like it was a long and painful road for you. You have my support, and I hope you are able to heal, at least some of the emotional scars that were inflicted. It's horrible to walk into a doctor's office and immediately have to negate what a previous doctor put on the health record.
Much love and respect to you! 💜💜
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That is truly frustrating.
My heart goes out to you as continue to search for answers.
Please don't stop advocating for yourself.
Sending positive thoughts, Doreen (Team Member)
