Trusting Doctors

I’ve spent the day crying on and off. I know, not the most positive start to a story. I’ve been experimenting with my post-Whole30 diet for a few weeks now. There have definitely been days where something I did the day before triggered me and resulted in my enduring extreme pain and lack of mobility the following day. As I navigate the frustrating maze of my diet, I am bombarded with bad days. To compound the pain I’m already experiencing, I’ve had chronic UTI symptoms for months now. My symptoms became so painful that I ended up in the ER where they put me on a new strain of heavy antibiotics to try to assist me in healing. To top it all off, I learned today that the various antibiotics they have had me on for the last few months, have had no effect. Why you may ask? Well, because I never had an infection; they misdiagnosed me and they believe now that I have *wait for it* another incurable condition called interstitial cystitis. Fan-fricking-tastic. Do you ever feel like doctors have no clue what the f*** they are doing… or is that just me?

Ok, so you may have noticed that I’m a little worked up today. Being exhausted, in pain, and receiving bad news are horrible combinations. In truth, I am grateful for doctors. My OB was incredible, my rheumatologist (while still new to me) is great, my Chiropractor is phenomenal, and my general doctor is ok. My only hope of finding answers is in the hands of doctors. The frustrating part is in finding doctors who will treat me with respect and listen to me. Why is it that so many doctors lack basic human interaction skills? I’ve had doctors tell me I’m lying, that I’m not in pain, that I’m drug seeking, patronize me, ignore me, laugh at me, yell at me, roll their eyes at me, make jokes about me to their staff, call me names… etc. The list goes on FOREVER!

To give examples of a few of these, I had one doctor years ago tell me that my shoulders didn’t really dislocate. He said, “If that were true and I moved your arm like this…” before he could finish saying, “then your shoulder would dislocate,” he dislocated my shoulder. I’ve never seen someone look more ashen or nauseous before. I had another doctor tell me I was drug seeking without ever looking at my chart to see that I’d never accepted any of the narcotics or opioids that had been offered to me. (*side note* I have no judgement for those with chronic conditions who do use pain medication. Taken safely and under doctor supervision, pain medication can make life livable for those of us dealing with chronic pain! I personally am trying my hardest to avoid taking pain medications for multiple reasons, one of which being for me they limit my ability to interact with my children, and when I’m on medication I need help from friends and family to ensure my children receive the best care possible. This is my current personal decision and may fluctuate over the years with my condition. It is not a global statement and each person with a chronic condition has to make their own decision on what works best for their life!)

Finally, as a last example, I recently saw a cardiologist to evaluate a cardiovascular issue I’ve been dealing with for years. Every time I’ve seen a cardiologist for my cardiac episodes, they’ve never been able to track the fluctuation or give me a diagnosis. As of the last month I’ve had a few of my doctors mention that I may have a particular cardiovascular syndrome. I went to the cardiologist, a new cardiologist to me, and his greeting to me was, “Ummm, do you have a parent here?” Confused, I responded, “Uhhh no, just me.” And continued to explain why I was there. He clearly didn’t listen to a word I spoke and interrupted again asking, “Who is your pediatrician?” I once again informed him that I had no pediatrician, I was an adult with two children of my own. He nodded and gave the customary grunt of “I’m listening” before looking back at me and asking, “I’m sorry, what did you say the name of your pediatrician was?” I was baffled. During my time with him, he refused to evaluate the condition I’d been sent in for and instead tried to un-diagnose my conditions which are not cardiac related and have been diagnosed by other doctors. He made statements such as, “I don’t know why but people like you seem to seek me out.” I don’t know what he meant by “people like me”… I wish I had responded, “You mean people with cardiovascular issues…?”

This was just the most recent experience I’ve had with doctors dismissing me. Wasting my time with appointments such as this one is demoralizing, exhausting, and infuriating. When did it become ok for doctors to disrespect their patients? When did doctors start assuming their patients lied about everything? How can we find doctors who are patient, kind, understanding, respectful, empathetic, and good listeners? I see more doctors in a month then most people probably see in years. Doctors are vital to my health. I know this is true, but each time I suffer through a misdiagnosis, have doctors cause me unnecessary pain, or endure another doctor who treats me with inappropriate and dismissive behavior, it causes me to lose a little more trust in them. This is obviously unfair and difficult to the good doctors out there who are genuinely trying to help me. How do we find that balance? How can we safely evaluate which medical professionals we can trust and which we can’t? For any doctors who are reading this post, please know that patients with chronic conditions like me have likely endured some horrific treatment from medical professionals in the past. Taking a minute to make us feel like a priority, to make us feel heard, to make eye contact with us, to take things slowly and not rush to conclusions, these are the things that help build up trust. The fact is we need you and we want to be able to trust you.