An Open Letter to the Doctors Who Dismissed Me

To the Doctors Who Brushed Me Off

This post was sponsored by the Self Care Movement. While I received compensation through the Chronic Illness Blogging Network, these words are my own. The thoughts and opinions expressed here are a combination of my own experiences throughout the years, as well as what I have heard from others in the chronically ill community. 

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 amazed 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.

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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.

Self Care Movement

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 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.

Chronic Illness and Finding a Diagnosis

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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  1. Clodagh says:

    Another brilliantly worded blog post! It is scary how alike our experiences are, I was constantly told it was ‘all in my head’ and that I was ‘stressed’. Thank you for this honest piece.

    • Kami says:

      Hi Clodagh! Thank you so much. Wow, such similar stories. It seems so many of us in the chronic illness community have had to fight for diagnosis and treatment. Exhausting on top of an already heavy load! Thank you for sharing you’ve been here, too.

  2. Chronic Mom says:

    I really relate to this post. I have Lyme and was brushed off my dozens of doctors, so now I’m sick for life when I could have been healed if they had just listened.

    • Kami says:

      I’m not sure I knew you had Lyme, too. Wow…you know this very well yourself I am sure! I’m so sorry you’re in a similar boat, lovely. I too went untreated and undiagnosed for too long. I’m guessing I’ll have lifelong effects also, when I could have been healed. Sending you gentle hugs today. Thank you for sharing that you can relate. <3

  3. Jamie says:

    I’m so sorry you had to endure this. Doctors tend to put their egos first and the patient last. I hope you’ve now found a good team of doctors to help you! xoxo

    • Kami says:

      Thank you, Jamie. You’re so sweet. Yes, unfortunately that can be the case, can’t it? I am thankful to have a doctor I trust and can rely on now. It’s such a gift! Hugs to you, friend! xoxo

  4. Pippit says:

    Great post and so true! There is so much harm done in the very act of doing nothing! Doctors and the companies that employ them don’t undersrand the concept that this slowdown and stoppage of care, and discounting approach is as much a form of malpractice as a botched surgery or prescribing a damaging medication.

    If doctors are so “concerned” about a patients’ mental state they should think about how this makes patients feel when we have no ally and are forced to fight and prove ourselves a billion times over.

    Keep posting about this topic! If enough of us speak out publicly it will change and the tide will turn!

    • Kami says:

      Hi Pippit! I nodded while reading your comment. You said it so well: “it’s as much a form of malpractice as a botched surgery or prescribing a damaging medication.” Somehow it’s okay to brush us under the rug as paranoid or irrational when we are just desperately trying to get well!

      And yes – I’ll keep beating this drum of truth! Hoping always for the tide to change. XO

  5. Valerie says:

    As I read through your posts, I am just so encouraged. I suffered for 18 long years before i was diagnosed this past March with Chronic Lyme. I was told frequently it is “all in your head.” Now I am nearly disabled. What you wrote here, is what I have always thought. I love your honesty and the heartfelt care you put into your posts. Thank you so much! Blessings, Valerie

    • Kami says:

      That’s so long to suffer, friend. I had a similar journey of being told for most of my life things were all in my head. It’s a painful way to go through life, having your pain and real symptoms belittled or dismissed. I’m touched by your kind words regarding my writing and the blog. It makes me so happy to be able to connect with others here. Sending you a hug today!

  6. Peter says:

    Love the post Kami! Prior to being diagnosed with lyme disease, I visited the ER three times (once in Newland, NC and twice in Boone, NC) for weird episodes where I knew something was wrong with me but didn’t know what. The third time, the nurse told me she would be right back. She returned with a cordless phone and handed it to me. When I said “hello?”, the person on the other end said they were from the behavior clinic and the nurse told them I wanted to come in and talk to someone about my problems. I about flipped my lid and felt like no one was listening to me or wanted to help me.

    The state of our medical industry is sad and frustrating. A 10-minute (usually less than) visit can’t accomplish much of anything. They usually never have time or take the time to read the 20-page form you spent 3 hours filling out. I’ve had this happen to me so many times. It’s just frustrating. Sorry for the vent session. Thanks for all you do. You’re awesome. =)

    • Kami says:

      No apologies for the vent session, Peter – we all need them! It is sad and incredibly frustrating to hear so many stories of being overlooked or belittled by medical professionals. It is difficult to understand the mentality of people just “making things up.” The ER is NOT a fun place to be, why would any of us CHOOSE to be there? For attention? Is that really worth getting poked and prodded? No, it’s not. I’m so sorry for all of the experiences you’ve had to endure. I couldn’t believe when I read that you were simply passed off to a behavior clinic!! Maddening, I’m sure! Thank you for sharing here. I truly believe these stories have to be told for awareness to have a chance of spreading. Hoping you’re day today is okay, friend.

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