When It's Time to 'Break Up' With Your Doctor
If you have a diagnosis like me, you’d think we’d be in the clear of dealing with dismissive doctors. But most of the time, we’re not (shocker).
Now, this isn’t going to be about every single doctor out there because there are some phenomenal doctors who have worked with me in finding a personalized treatment plan that helps tame and prevent my symptoms.
This is about the doctors and health care providers who are dismissive and rude.
Have you ever gone into your doctor’s office and complained of ongoing symptoms like brain fog, joint pain, gastrointestinal issues, unexplained rashes and they look at you like, “I don’t know, this is too complicated for me?”
There’s a good chance you have and that’s why we’re bonding right now over our mutual feelings of disappointment, hate and frustration toward some of the medical community.
I have eight autoimmune diseases. Here’s one story. At my urologist appointment, I told my doctor of symptoms I experienced from interstitial cystitis and my doctor literally looked at me with a smile and said, “I’m not sure, anything else?” I said, “No doctor,” to which he replied, “OK, let’s set up a follow up in six months,” and then walked out.
I paid $100 for three minutes of his time and for him to do literally nothing. I was so incredibly frustrated.
I was so livid because I was excreting three-inch pieces of tissue at the time and was in constant pain. He gave zero insight into if that was normal or not and gave no suggestions for relief.
That day was the day I “broke up” with him. I drove home after verbally cursing him out in my head, I called the office and asked to switch doctors in that practice. No one would take me after I complained about him and his lack of care. Probably because I seem too high maintenance…aka, I want to solve my problems.
Weeks later, one doctor there said he would take me. He is phenomenal. He is thorough and has helped me reduce my symptoms drastically. I’m so happy I stood up for myself. Because of him, we worked together as a team. He respected and validated my symptoms. He answered my questions. He didn’t make me feel dumb.
I now have many good days and a few bad days that I usually do to myself if I eat dairy (a girl needs her gluten-free chocolate sometimes).
My next doctor was a rheumatologist who would never work with me. It was her way or no way. She blamed everything on lupus instead of investigating anything else. I’ve learned that those with chronic illnesses often tend to have underlying issues like vitamin deficiencies and thyroid disease.
I asked for a full thyroid panel (most doctors don’t do this, it includes six types of tests) and tests for vitamin D, B12, B6 and magnesium. She fought me the entire time. She wouldn’t even sign off on all of it. I paid for some of them myself and found out some of my vitamin levels were low and the thyroid panel came back positive.
I didn’t “break up” with her at that point. Why? I don’t know.
Probably because I was tired. It’s exhausting to have to advocate for your health in a place that is supposed to be a “safe place” to talk about your health and ask for help. When that wasn’t the case — that’s when I knew it was a toxic relationship.
So here’s when I had enough. I had a lot of fibro and lupus-based chronic pain at one point, and she talked me into taking a medicine used to help with that kind of pain. I tried it because she’s the doctor and she knows best.
Within 24 hours, I had body-wide tremors, nausea and a fever. I had this for a week hoping it would go away. I called her office and told her what was happening. This doctor told me to continue taking it and that it was just a fibro flare.
Are you kidding me?
I asked other doctors I had an established relationship with and they said to stop taking it. I stopped taking the medication and within 24 hours, all my symptoms went away. I read the side effects and it said to stop taking the medicine if that happened.
I “broke up” with her that day. I was done being ignored. Done with doctors who have to feel like God or they have a hissy fit.
I get it doc. You’re pissed that your patient’s knowledge of her own body mixed with some intelligence is different. But you don’t have to be so argumentative just because I don’t have my doctorate in emergency based medicine.
You’re right, I’m not as “smart” as you. I didn’t go to school for emergency based medicine because eight autoimmune diseases decided to jumpstart their career during the middle of my college years.
So, thank you for not being a doctor who thought critically about my illnesses, but a dismissive doctor.
What I do have is a bachelor’s in health sciences and a thorough understanding of how our environment works with our genes (epigenetics) to create a perfect cozy place for a disaster to be activated inside of me. That’s how the disease starts. The symptoms I experience are warning signs from my body. It’s saying, “Yo, something is off and I’m feeling super sick and I need you to help me before there is permanent damage and lifelong repercussions because of it.”
So, when I experience these symptoms and they persist, I put my livelihood, my future, my dreams and aspirations in my doctor’s hands.
The last straw for me in breaking up this toxic relationship is when I realize you will never help me in the ways I need you to. It’s your job to work with me as a team. To find a personalized approach and to help me determine the root cause, not use a band-aid approach or flat-out dismiss me.
When I ask for tests I’m paying for anyway, I think I know what I’m talking about because I wouldn’t waste hundreds of dollars of my hard-earned money. I’ve spent thousands of hours over the last six years learning about how my body works. Learning how doctors operate and what is lacking so I can fill in the gaps of my own treatment when I shouldn’t even have to. I’ve learned a lot and write about it on my blog.
So, question doc: why are you so toxic? Why do you continue to treat your patients like crap and why are you still practicing medicine?
Question for all my chronic illness warriors:
If you have a toxic relationship with your doctor, when are you going to end it? You deserve to work as a team with your doctor. You deserve to be heard, to feel validated and to have a treatment that works for your body type.
You deserve a fulfilling future and a chronic illness shouldn’t stop you because of the lack of care from your doctor.
Getty image by megaflopp