The Expert of Your Own Experience

Back in May, after spending 2 days in Milwaukee for the 8th annual , I returned home in an immense amount of pain/swelling. After getting just 2 hours of sleep due to pain that night, I got up the next morning and immediately called the on-call rheumatologist at the clinic I had been seen at since November of last year.

From the beginning of our conversation, the physician I was speaking to was belittling, condescending, and rude to me. As I described my symptoms and pain level, he said things such as: "oh, well that's interesting," "I don't know what to tell you," and "there's nothing I can do for you." My personal favorite was: "I'm looking at your chart and there appears to be some confusion about your diagnosis. You're just going to have to wait until you can be seen at Mayo Clinic in July."

After a short diagnosis debate, I shared that I had taken 4 Tramadol in the past 24 hours to no avail. To that, he said,  "I guess I can get you some high dose, short term Prednisone." As he was finally writing the prescription, I asked him to send it to the pharmacy nearest to the place I'm living for the summer versus the one I had entered in the system approximately 30 minutes away (in the town where the clinic is located). His response? "You live in St. Paul, why can't you drive 30 minutes to pick this prescription up?" 

A million questions raced through my mind.

  • Did this physician listen to me when I told him I had been bedridden the past 3 days due to pain?
  • Does this physician realize how much LIFE has been taken away from me because of said pain?
  • Does this physician understand that driving 30 minutes is absolutely out of the question because of the extreme symptoms I am experiencing? 
  • Does this physician recognize that July is TWO months away?

I told him I would take care of transferring the prescription myself and ended the phone call by asking him one simple question: "Doctor, do you suffer from any kind of chronic pain?" He responded, "No, I don't." And with that, I left him with one word: "Exactly." 

About two weeks later, I made another call to the clinic to speak with my (now ex-) rheumatologist. I had been bedridden for another 3 days due to a low grade fever, severe pain/swelling, and awful fatigue. I called to get her suggestions and something get me through until I could see a new rheumatologist in the area + make it to Mayo after months of waiting. After a few hours of waiting for a return phone call, I got her nurse on the line. The nurse said these exact words before proceeding to tell me to have a nice day: "Dr. ******* says she can't do anything to help you."

Now, perhaps this little stunt wouldn't have upset me so much had I not been experiencing level 8 pain or had I not already endured countless rude interactions and useless phone calls with other doctors in that clinic...but this really set me off and aided in reaching a whole new level of hopelessness. Things were looking bleak. These are issues within our healthcare system that need to be addressed.

The most aggravating part of this entire situation is clicking onto the clinic's website and reading their mission statement which states that their number one goal is: "...to provide the highest quality consultative and comprehensive rheumatologic care to patients..."

I'm not Merriam Webster, but I can tell you that those words and the care I've received are not 
synonymous. Let's break them down a bit:
Consultative (adj.): giving advice; having suggestion(s); possessing the power to give advice, but not to make decisions. 
Comprehensive (adj.): including many factors; covering completely or broadly.

None of the phone calls I received in response to multiple cries for help could be described at consultative or comprehensive. This is NOT patient-centered care and it is certainly not care that I will be subjecting myself to any longer. 

My decision to leave this particular clinic (though it was process in itself to find someone new) was my best decision yet. In mid-July, I saw a new rheumatologist in my area who took my entire chart into consideration and further searched for answers even when they were not black and white. In fact, she searched for them ESPECIALLY because they were not black and white. She also caught new signs of joint inflammation and degeneration and started me on a rigorous treatment plan. I went to Mayo Clinic a week later and received similar care and concern.

It's now been about a month since I saw my new rheumatologist. I am slowly adjusting to new medications, therapy sessions, and a more elaborate daily schedule. I am doing well because someone decided to listen. I am preparing to move back on campus in two weeks and because of this new treatment plan, I will likely be able to thrive. At the very least, long days spent bedridden and writhing in pain will not be the "norm." Should I experience a flare like that again (odds are I will at some point -- that's just autoimmune disease), I know that I have a physician who will make it her mission to help me get it under control as soon as possible.

All that to say, I did not write this post to slam the clinic I was formerly seen at (though I would not recommend them to anyone). I wrote this post as a reminder to advocate even if it involves tears, your voice shaking, and having to lay down the law with doctors who think they are superior and all knowing. You are ALWAYS the expert of your own experience(s)...especially when it comes to suffering from chronic pain/illness. You are the one who has to keep holding on when the pain is unrelenting and excruciating. Don't forget that...and please don't forget to use your voice.



You have to be your own advocate and take your care into your own hands sometimes. You are amazing dear friend!


It breaks my heart that you received that kind of lack of care. I've had struggles with my doctors office, but my doctor has always been amazing. And when I let him know what his staff has said/done, he takes it seriously. I've been very lucky. I'm so glad you have found a new doctor and your treatment plan is helping you!!


Oh sweet Kenzie..>I am so proud of you for taking control of YOUR health!! You are amazing dear girl and you deserve to be heard!! LOVE YOU!


I'm so sorry that you experienced that, but I'm so impressed by how you handled it! You are incredible.


good for you for not taking no for an answer! and glad you found a new doctor that is helping you out.