Hi there. You may not remember me, but we’ve met before. Allow me to jog your memory.
I was the patient whose symptoms were all in her head. The child clearly looking for attention, the teenage-girl-hypochondriac, and the newly married woman who was looking to blame all her symptoms on new medication instead of owning the fact she’s “just stressed.”
Yeah. I’m sure you’re as happy to see me as I am to see you.
Our appointments never went quite how I was hoping they would go. Maybe you feel the same.
I am not so naive to think that I am owed special treatment from you or any other physician. I do not believe I am better, or that my case is more important than any other of your patients.
But I believe I am deserving of being heard and taken seriously.
I know you have studied and researched and experienced more than I ever will in the medical field. You have devoted countless hours to learning about the body, understanding various treatments, listening to the top doctors and all with the greater calling of making the sick well.
There is no doubt in my mind you have worked hard to get to the point at which you are at today. I am amaze at the commitment it has taken to get you this far.
Yet I can’t help but feel sadness when I think of how I slipped through so many of your fingers when all along my illness could have been treated. Years of suffering could have been avoided had you taken me seriously years ago.
I was conditioned by society to take anything spoken by the man in a white coat as the final word. The greatest truth and wisdom. Because of this I retreated each time you gave one of your countless responses that things were “all in my head” or normal to experience. I began to accept that my symptoms had no place or answer in any doctor’s office.
The place you go in hopes of feeling better became my least favorite place to visit. Because inevitably I often felt worse upon leaving.
Now I am here today facing a disease that has gone untreated for far too long. The damage has been widespread, the emotional toll so deep. All because it was never addressed in its beginning stages.
The symptoms you didn’t believe or failed to understand? The bizarre activity going on under my skin that you couldn’t see? I will never had the option of dismissing them as easily as you dismissed me.
They have kept me up through the night, on edge throughout the day. The ant crawling, ears ringing, severe fatigue, the sudden muscle weakness and spasms. I could not escape them, yet you brushed them aside. Told me I was anxious or stressed.
You told me the heart palpitations were all in my head, though I knew they were not. And somehow I landed in the ICU last year with a heart that stopped. And again in the hospital several months later with chest pains that took me in and out of consciousness.
Still all in my head?
Do I blame you for the madness I have been forced to live through? No, I do not. However, I’m going to call a spade a spade: you played a part by not listening. By giving the impression you had the answers even when you had no clue.
The things that go unseen are not any less real than the results that show up on your trusty tests. The fatigue that has zapped all my energy, the weakness in my limbs that keeps me from functioning, the dizziness that often keeps me glued to the couch.
Just because you cannot see the myriad of symptoms I battle, doesn’t mean they aren’t there. And it surely can’t be instantly diagnosed as a psychological issue without delving more into the wide range of other possibilities.
Instead of admitting you did not know the answer, you ignored or belittled my pain and suffering. You even made me feel it was my fault I wasn’t getting better, even though I was working harder than ever.
You told me a little more exercise would cure my fatigue. Or that I just needed to eat more to combat my declining weight (good thing, because I hadn’t even thought of that). You said that a bit of meditation would relieve my excruciating 9/10 pain that kept me writhing for weeks on end.
I do not expect you to have all the answers and I don’t believe you will instantly be able to take away my struggle. But I do believe you have connections and the ability to acknowledge that there are limits to your expertise.
And so I write this in the hope of you hearing my story. OUR story. The story of patients who are genuinely searching for answers, desperate to find relief as they claw their way through the mess of chronic illness.
I write with the purpose of you hearing my heart and in turn your kindness sparing another patient the added pain, guilt and frustration that our interactions have caused me over the years.
I am sharing this openly for the solidarity of patients across the globe. To remind them their health matters. That their gut instinct of something being wrong or “off” in their body may be right on the money. And it’s worth it to search for answers, for healing, for someone to help.
And if you, as their doctor, doesn’t know the answer? I beg of you to humbly say so. We will hear and respect your answer, knowing it’s getting us one step closer to another physician or specialist who just might have some insight.
Someone to see beneath our “you don’t look sick” exterior, and help us fight for health.
While these experiences have happened in real life to myself and others I know, there are also the doctors who have gone above and beyond for us. Some even risking their licenses by treating a disease that isn’t recognized by the medical community. To these, I extend my deepest gratitude. We need you in this world.
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