Dear Doctor, You’re Fired! – When it’s Time to Change Lupus Docs

I assumed doctors were more knowledgeable than me about my chronic illnesses.  I expected them to have my best interest at the forefront of their treatment for me.  I took for granted that my disease management, health, and overall quality of life, were my doctors’ priorities.  You know where this is going…Unfortunately, sadly, I discovered that these things are not always true.  We customarily hold physicians in high esteem, and rightfully so, but we forget and take for granted the fact that they are like us, human.  They can be wrong and make mistakes.  A doctor’s knowledge is not limitless, nor is it all encompassing.  Their decisions regarding patient treatment can be bound by their life experiences, prejudices, judgements, efforts, feelings, intelligence, and wisdom.  Not to mention that they may be lacking in any of these aspects.

What’s that you say?  “But Stacey, that’s preposterous that a doctor wouldn’t know everything there is to know about lupus, fibromyalgia, _____(insert any illness).”  Take for example lupus. Most doctors don’t specialize in lupus, even some rheumatologists.  (Get out!)  My rheumy’s primary focus is on vascular issues and arthritis.  While I absolutely love my doctor and refuse to stop seeing her for my lupus management, I need to be aware of her strengths and shortcomings when it comes to my care.  The way to compromise is to visit another rheumatologist whose sole focus is lupus, at least on an annual basis.  I get to keep my favorite doctor for day-to-day disease management (Yeah!), while consulting with another doctor who provides disease expertise and oversight.

While no individual physician may meet all of our health needs, or have exhaustive knowledge on any specific disease, that should not excuse doctors from failing to provide care to the point where it may be detrimental to our well-being.  What we absolutely, without waiver should expect – no demand – is that doctors do no harm.

If you read my article, “Medications are my Chronic Illness Reality,” you know that I recently experienced a setback in my care when it came to my psychiatrist.  I was once again reminded, okay whacked upside the head, with the fact that doctors don’t know everything.  My psychiatrist’s ignorance and hurtful comments caused me more pain than I care to admit.  I left my last appointment with her in a place that was worse off than before.  Afterwards, I allowed myself time to calm down and regroup.  Then I procured an appointment with a new doctor.

I did not want to simply disappear from my old psychiatrist’s calendar without an explanation.  I wanted to send her a letter that disclosed my reasons for firing her from my medical team.  (I try to remind myself that doctors work for us – after all, we pay their salaries.)  Ideally, I hoped my letter would enlighten my doctor and prevent any of her future patients from having an experience similar to mine.  However, if you’re like me, (sick with a chronic illness) you may not have the energy or cognitive clarity to articulate and compose a well-written letter.  Add to that being emotionally charged, and the end result may be less than eloquent or constructive.  Case in point, here is an example of what my letter would have stated:

Dear Doctor,

You suck.

Your former patient,

Stacey

Obviously, not an appropriate or adequate letter to send.  (Enter boyfriend.)  My boyfriend took it upon himself to draft a “dear doctor” letter for me.  #browniepoints.  He was able to write the letter from an objective perspective, where I couldn’t see past the steam coming out of my nose. This letter got me thinking.  Maybe one of my chronic illness comrades could use this letter for a similar situation.  If only one of you find this letter useful, it’s worth it for me to share.  (Of course I obtained permission from said boyfriend.  Thanks again honey!)  If a situation arises, you are welcome to use this draft letter, changing and personalizing it as appropriate.  Although, I hope you never need it.

Dear Doctor ___________,

I’m writing you concerning our last appointment and your comments regarding my treatment, particularly my medications.  You stated that I should get off my pain meds, and your reasoning was “because it’s not like I have cancer”.  I found that to be extremely hurtful and offensive.  Your statement completely discounts the fact that I have chronic illnesses and belittles my physical and emotional feelings, and the struggles I am going through, which can be life threatening at times.  I expected you, being in the field of psychiatry, would understand that the chronic pain I endure has caused severe anxiety and depression, which are the reasons why I sought treatment from you.  Having chronic illnesses, coupled with anxiety and depression can cause a person to lose hope, to believe there is nothing they can do about their situation, their life is worthless and the future is bleak.

I suffer from lupus, which is a chronic condition with no known cure.  I suffer from fibromyalgia, another chronic condition with no known cure.  The lupus and fibromyalgia symptoms have been debilitating at times: muscle and joint pain, extreme fatigue, peripheral neuropathy, Raynaud’s phenomenon, nausea, hair loss, and cognitive dysfunction.  For years, I have been battling a recurrent cerebrospinal fluid (CSF) leak.  The CSF leak caused a Chiari malformation where my brain sags through the base of my skull.  As a result, I have daily headaches and frequent migraines (often multiple migraines each week).  My chronic illnesses have become disabling to the point where I had to stop working.  My conditions and situation make me feel isolated and hopeless.

That in itself makes life daunting and frightening.  Using pain medication to take the edge off of the physical pain gives me a chance to have a feeling of normalcy.  Relieving my physical pain allows me to function on a somewhat normal level and improve my quality of life.

Telling me that ‘I don’t have cancer so I should get off pain meds,’ hurt me deeply and caused me distress and anxiety.  If a doctor such as yourself, cannot show me empathy, who can I turn to for help?  It gives me pause as to why I bother trying so hard to combat and manage my chronic illnesses.  Instead of helping me, you have actually increased my levels of anxiety, depression, and fears and caused a setback in my care.

I cannot continue to see you for treatment.  I need to move forward to care for myself the best way possible.  I don’t feel that you support me or my mission to get better.  I will be seeking treatment from another doctor.  One that can have empathy and compassion for anyone suffering from chronic illness.  While I may never be cured from lupus, fibromyalgia, or my CSF leaks, I can at least give it my best shot.  I hope that you do not inflict more harm on other patients simply because you cannot see how bad they may be hurting right in front of you. Whether you don’t accept what I am experiencing, don’t understand the effects of chronic illness, or you simply don’t care, I refuse to tolerate your mistreatment.

Regards,

Stacey