When You Don't Feel Seen and Heard By Your Doctor: Part Two

  Because I have chronic illness and rare conditions, I have to work with doctors a lot. I have had good experiences with doctors but I have also had some really bad experiences with doctors and the medical world as a whole. I often don’t feel heard or seen as a patient and as a person. 

  It is incredibly hard for me to learn to trust doctors. And even more so, to not lose faith in them, once I have learned to trust them. So when I find one that I feel seen, heard and validated by, I consider them rare. Almost as rare as my conditions. I value them. They are like the tiniest of lights in an often overwhelming darkness that is chronic illness.

  But here’s the thing, those doctors, that I do trust, and have a good relationship with, have also gotten it wrong.

  I feel sometimes that the look I receive from them is “Gosh how can this girl have so many mysterious symptoms? It’s probably just in her head”. Nothing that I haven’t quietly thought to myself, if I am being fully honest here.

  When you have chronic illness, it’s not uncommon to think that maybe you are just too sensitive, that you are losing your mind, that maybe somehow you are just confused. That you are misreading how your body is feeling. And truthfully, I have even lost the confidence to read it right a time or two.

  With one particular condition, I was having to communicate with my doctor every few days. Sometimes making a trip into the office weekly. I knew something was wrong and diagnosed the problem and told my doctor. I felt and could hear the hesitancy through the messages and then in person on her end. She took a test and I waited for the result, while the condition got worse. I felt down deep that I knew and had the right diagnosis. My doctor was not at all as certain as I was. 

  Sure enough, the test came back with what I told my doctor had been the problem. And I cried. I had started to feel like my doctor thought I was making things up or even losing my mind. I had even taken on those emotions. I had been so overwhelmed by my body, that I had started to think maybe it was true. 

  With that diagnosis, there was a feeling of validation, and a reassurance that I could indeed trust my body, if only I would keep listening and advocating for it. My doctor also I believe with that test, learned to trust me too. And respected me. 

  When I went back into the office to see my doctor that I trust for a follow up, I decided to share and tell her how I had felt. I let her know that I had begun to feel like I couldn’t trust myself to read my own body anymore, that I started to worry that her and her team had felt the same way, and had labeled me as just “emotional”. She said she understood and reminded me that I had been going through a lot, and that I could trust her, that I was not alone in this. I felt seen, heard and validated.

  I came to find my doctor had been overwhelmed with trying to get the right diagnoses for my mystery conditions. She hadn’t wanted to let me down and put me through anything else more.    

  I try and remember that sometimes there are many doctors who are trying their best with us rare patients. Many truly do care about us. And they want to help cure and fix our problems. Sometimes they miss that mark though and we are left feeling even more alone in our rarity.

  What I have found though is pause, and try to communicate to the human wearing that white coat rather than just the doctor.

  A patient and a doctor are to be a team. I think often times, patients are left feeling like doctors are the authority. Unfortunately, some doctors are the authority over a patient and are more about power rather than about the best interest of their patient. But when you are a team with the people (doctors) who are there to help you, you will feel seen, heard, and validated. And if ever you don’t feel that you are, communicate with them. Communicate to the person wearing the white coat. They might just listen. 

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