What I Want to Say to the Doctors Who Dismiss My Chronic Illness

I was diagnosed with lupus nearly five years ago now. I had thousands of dollars of tests, labs and visits. So many hours, so many sleepless nights not knowing why I felt so awful. I was referred to a rheumatologist who insisted, despite all evidence to the contrary, that is must be anxiety. I left that appointment in tears. All of the relief of at least having named what was wrong with me was stolen. I saw a second rheumatologist. She told me the symptoms of the medication could cause issues when I am much older, so she would not prescribe it. Even more of my hope died.

I moved two hours south and had to get a new primary care doctor. This one would not even acknowledge my diagnosis. I have been seeing her for two years trying to get help. I recently learned I had developed a form of cutaneous mucinosis. My legs were numb now, legions and sores covered them. A hole developed. I went in again to my doctor, was given a bandaid and told she would send dermatology a message. I had been sending my doctor messages, pictures, gone in for visits for two years for my legs. Throughout this time dermatology kept changing my appointments to phone visits and insisted I try the same medication, in different forms, to see if it cleared up. After finally getting to be seen in person by the dermatologist she told me I was causing the sores.

By this time my legs were covered and it had spread, though not as severely, to my entire body. I convinced her to do a biopsy. She took two samples from the same leg, two inches apart. She refused to listen as I told her which ones were new. My pathology results came back, chronic inflammation. The rest of the findings supported the diagnosis for lupus mucinosis. We had a phone appointment to go over the results where she told me they supported “mechanical injury.” I calmly and rationally laid out all of my labs, the pathology findings, and asked why she was refusing to listen to either me or my wife. We spent 30 minutes arguing with her before she agreed to order labs for inflammation. I am still fighting Kaiser to get a new doctor, and I am still not receiving treatment.

Something changed for me after the last appointment. I felt angry. For the first time, I felt angry. So, I wrote. I wrote an open letter to doctors. This letter is where I left my grief. I finally shrugged off the leaden coat of doubt, pain and sorrow. I accept my reality. I am strong. To my doctors, to Kaiser, all I can say is this, “You will hear me. I will make you see me. I will fight.” Below is my letter:

To you, I may only be a small color-coded time block of your day, an easily forgotten name amongst a list of countless others. You may consider me to be an inconvenience or just a mundane part of your workday. However, let me introduce myself. I am nearly 33 years old; I have served in two branches of the military; I attend law school at night after my workday ends. I am a gay, genderqueer person living in Trump’s America. Beyond all of that, I am a human being. I may only be another task to get through, but for me, this is my entire existence. I do not get to leave my troubles in the exam room while I go about my life. Instead, my life is frozen. I am stuck with a faceless shadow looming over me day and night. The twisting darkness visible only out of the corner of your eye. On my “good” days, and please do not mistake what a good day means to me for what it means to you, the fear of the pain, numbness, icy cold, dizziness, trembling and fog hangs over my every moment. Every choice I make adds more red to the ledger lupus keeps.

My life ended four years ago. Though I have seen many of your colleagues, most cannot seem to be bothered to hear my desperate pleas for help, relief or even just acknowledgement. When you walk into an appointment, casually late, remember that I have sat in this sterile, harsh room rehearsing what to say so you do not write me off as just another overreacting woman. I chose my words carefully, trying to convey my waking purgatory, making sure not to focus on the pain. After all, I would not want you to think I am drug-seeking. You are not there to prove us all to be liars and cheats, to unmask us in great fanfare as if we were a fortune teller on a stage who must be unmasked lest they con the poor unsuspecting public. I am not a fraud to be unmasked, and you are not the clever hero who pulled back the curtains to show how the trick was done. When you turn and walk out of the exam room there is not grateful applause cheering you forward.

I implore you, please take a moment before casually take your leave to consider whether you have actually provided answers, a theory or at least some plan other than your automated instructions telling me to come back in if things get worse or follow up with you in so many months. If I am there, telling you my reality, that is the “worse.” My health is not a casual experience for me, it is not routine, it is not a small annoyance. My life has value, and my days are precious. How many days would you be willing to give up waiting for the day someone else decides that now you have suffered enough, now you are worth their valuable time.

When you dismiss me, when you dismiss those of us with chronic illness, you dehumanize, devalue and gaslight us. You are telling us that our reality is not real at all, that you know better than we do. Your limited observation of my existence is somehow more reliable.

I, like so many others, put my trust in you, my faith and my life. In return you showed me that my life has no value to you. No one should be made to feel small simply because they dared seek medical help. You are no better than us. I am not beneath you. I deserve basic respect and dignity because I exist the same as you do. I had goals, plans and a life, just like you.

I am a person. I deserve more from you than this. Probably is not good enough and good enough is not enough.