Lara talks about her medical gaslighting experiences and how the severity of being medically gaslighted can impact how long it took for her to get diagnosed with lupus, causing her overall health problems and where she is now.
I think for most people with a chronic illness, medical gaslighting is something nearly everyone has experienced in a certain way.
Medical gaslighting is when doctors or medical professionals invalidate a patient's concerns for their own health, blame symptoms on psychological factors, or ignore symptoms altogether.
I went through a lot of medical gaslighting before I got my diagnosis. I was diagnosed with severe systemic lupus erythematosus, a rare autoimmune condition in May 2021 after experiencing symptoms for nearly 5 years! I got many comorbidities because of medical gaslighting which led to consequences I now have to live with which could have been avoided For example, my arrhythmias were not taken seriously for a very long time, which caused my heart function to be abnormally low.
“You’re too young for being sick“, “you’re faking”, “you just want the attention”, “it’s all in my head’, “you’re symptoms are too complex for one disease” This was one of the reasons why it took so long to get diagnosed with lupus. For doctors, it’s the easiest way to blame a patients’ complex symptoms on mental health—there, you don’t have to prove it. You can’t prove depression or anxiety with tests like MRIs or blood work.
My situation got much worse as time went on and I started experiencing more symptoms. I was then referred to a rheumatologist who suspected lupus from the first appointment! He was the first doctor who truly believed me. While I felt safe for the first time in 4 years, I physically got worse. One year after that appointment, I was officially diagnosed with lupus. I thought once I received a diagnosis, I would be safe from medical gaslighting—I was so wrong. It only got worse.
My lupus is a severe case—there wasn’t much medication helping me and my old doctors didn’t know why. They were totally overwhelmed with me. And what happens when doctors are overwhelmed? They don’t tell you that, they tell you your problems are your fault, again.
“I’m faking my problems”, “I shouldn’t take my medication to cause symptoms”, “I would stop eating and drinking to damage my kidneys”, “I just want narcotics”... I was denied therapy. My lupus flares can only stop with IV. steroids and they denied this. I didn’t get pain medication because they thought I just wanted to get high even though they saw big inflammations in my joints and blood vessels. They found my social media and used it against me. I got told I only felt bad to get attention and that social media is the reason I’m not getting better. They completely interfered with my private life and they had absolutely no right to do that.
The worst that ever happened was during one lupus flare, where my labs were not taken seriously and so doctors ignored acute kidney failure, which is why I still have problems with kidney function. Due to medical gaslighting, doctors ignored kidney failure and me having perimyocarditis. They told me it was my fault that my kidney function is bad without telling me how bad it was. I got told I was in kidney failure 4 months later by another nephrologist.This happened a year ago. I still have to struggle with the consequences—physically and mentally.
My trust in medical professionals was totally broken. I changed doctors after this and thankfully, my new doctors are angels. They do everything to help me, but something in my head still won’t let me trust them 100% because of everything that has already happened.
This also worsened my physical health. My kidneys are damaged. It’s better than before, but my kidney function often gets bad during flares. I have a severe cardiac involvement and need a pacemaker because of sick-sinus-syndrome. I’m receiving chemotherapy at the moment to try to get my lupus under control. I was in ICU multiple times and it’s so sad that it went that far before I was believed. New doctors had to fix all the mistakes my old ones made. It was a “life or death“ situation and I’m pretty sure it didn't have to come to this if they had just believed me earlier.
Medical gaslighting is much more than just not getting believed. There are cases where it can become life-threatening just because doctors don’t want to listen to you. I had to experience those situations way more than I can count. I never want this feeling again and I don’t wish anyone to have to go through something like this! So listen to your bodies, you know your body best.