Feeling Invisible
I recently waited over two hours for a consult with a new doctor. After I was called back I was seen initially by the physician assistant who relayed back to me why I was visiting the office and then asking, "so otherwise you are healthy?" The blood rushed to my face flabbergasted as I said hardly and proceeded to inquire why she had not in fact seen the 20 years of records in the chart she had or taken any time to read the many forms I was asked to fill out. To say that the appointment spiraled downward from that moment on is an understatement. She and the doctor, who eventually graced me with her presence, would never see me as a whole patient. I was only there for the one small thing they were consulting on and they would never take time to learn or understand me.
If any additional testing was required it would mean the involvement of my other practitioners and the blank stares that faced me when I said they would have to speak to them spoke volumes about their unwillingness to work collaboratively.
It shouldn’t still surprise me or upset me when these encounters happen and yet it does. How can a medical practitioner so easily dismiss the chronic health issues I live with? Why will they never try to understand me better to treat me or ensure my safety? They instantly made me feel unheard and made me feel like my diseases are inconsequential despite the havoc they cause in my body and in my life daily.
Now after decades of working at building my medical care team I do know when someone doesn’t make the cut and can without hesitation walk out the door and never look back. This doctor isn’t a good fit and won’t be joining my all star team but it took years for me to feel empowered enough to not just expect more but require it. Just because these are doctors and professionals doesn’t mean they all act that way and it certainly doesn’t mean they will be a safe practitioner for me. I do not have to feel dismissed or unheard by medical practitioners meant to listen and help me. I do not have to feel like my health issues don’t matter. I do not have risk them causing harm to me.
And even though I can know all of this it did not make my visit any less upsetting or bring a rush of emotions and memories of prior trauma from other similar moments of being marginalized in a health care setting. So I have sat with those feelings because they are real to me but I have also moved forward and sought out another opinion- this is my power in this process. One I have learned worth asserting even though it means more time spent at appointments and even another risk of a failure.
My expectations for my second opinion appointment were also quite low but as the doctor walked in after saying hello, her first question was, “what can I clean my hands with to safely examine you?” In that one question I felt seen and understood. It didn’t matter that she has never treated a mast cell patient because she was treating me. She had read my records and understood enough that I had sensitivities to be aware of. She is willing to learn from me and my practitioners. She is bringing her much needed expertise to the table while also considering me as a whole patient. She will happily collaborate and I know will hear me when I am concerned or in pain. And just like that I felt supported knowing I knew I had found a new partner. The relief of course was palpable and the gratitude I have for this new practitioner is immense.
These two experiences could not have been more different and yet sadly demonstrate the landscape all people and especially rare diasese patients navigate regularly. It takes most years to find the one practitioner who will listen and help - it took me over a decade to find my first. I remind all those still looking to listen to your gut and continue to seek care until you find the right fit. We are not invisible and we deserve to be seen and heard and cared for in a thoughtful and supported way. And while it may feel hopeless at times it will be worth it when you find those bright lights who will stand with us and care for us and even wash their hands a certain way to keep us safe.
