It’s Okay To Leave A Provider Who Isn’t Helping You

by Megan Marjorie

“Well I better start planning my funeral,“ I said aloud to my mom in a “joking“ manner but was pierced with how real the statement felt after we had just both sat through what felt like another failed appointment with my immunologist.

I understood that I was… And well am a “hard case.” I have pretty severe CVID (along with a plethora of other rare diseases and health issues ). And deathly allergy to IVIG and SCIG  .. aka the one form of treatment I absolutely need to keep me alive. 

But after another stint in the ICU, after ANOTHER  severe reaction to the “life-saving“ treatment I received, all he had to offer was nervous laughter and the continuous statements:

• “I don’t know what to do with you“
• “I don’t know what to do next“
• “I just don’t know“

I wanted to leave that appointment with a game plan,  and all I left with was crippling anxiety. Admittedly for the past few months after every appointment with him, I had felt pretty hopeless. But this was a whole new level of hopelessness. My IG levels were plummeting. I had been catching every infection known to man. I once again just about died from the treatment that was supposed to save my life. And all I get from the one person on this earth who was supposed to know how to help me is “I don’t know.” 

Either my “funeral arrangement” thoughts weren’t far off…Or I really needed to consider making some major changes.

And these major changes would begin with switching immunologists. That thought horrified me because I felt a sense of loyalty to my immunologist.

I mean he was the one who diagnosed me. So I would continuously excuse his behavior, excuse the appointments that led to nowhere.  And say to myself after each and every appointment, “Maybe he was just having a bad day.”

But I had to force myself to sit face to face with reality and realize “This is more than just a bad day“. How can I ever get “good care”? When for months I haven’t considered a single appointment with him to be “good?”

After this realization I was sitting on the couch pouring out this internal struggle to my mom, debating on what to do next, and she asked me one question that changed everything. 

Mom simply asked me, “You hired this doctor to do a job. Is he actually doing it?” which changed my entire thought process as I thought out loud. 

“If he were a cosmetologist, and after a couple of really good haircuts, he was now giving me super ugly haircuts or half-finished haircuts every time I saw him, would I continue getting my hair cut from him?“

The answer was an obvious NO!  A lightbulb went off as I made the realization… If I wouldn’t put up with a bad haircut.  Why am I putting up with countless ‘bad health appointments’ with this provider? My health is more important than my hair. After that realization, I started scouring the internet looking for a new immunologist that night. 

And after months of searching,  a few “trial and error“ appointments with other providers, I FINALLY found an Immunologist who looked me in the eye and said “I don’t know everything when it comes to your case, but I have a lot of ideas, I’m willing to do a lot of research,  I believe you have another immune condition that needs to be treated, and with that, it could help us treat your immune deficiency, I believe what you are going through, I’m not going to give up on you, and I strongly believe I can help.“

I entered my appointment with him in near tears fearing I’d be left hopeless again. I left the appointment crying tears of joy in my car, because for the first time in years, when it came to my immune deficiency, I finally felt hope.

We give doctors and medical providers the highest amount of trust out of any and every professional we hire. We don’t come to them with a flat tire, toilets that need fixing, hair that needs taming, or a suit that needs alerting, We come to them, trusting them to fix…US!

We come to them weak, vulnerable, scared,  sick, sometimes almost literally with our heart in our hands uttering one not-so-simple statement.

“Heal me…make this suffering end.“

I fully understand that the human body is WAY more complex than a house’s plumbing system. I’m not even saying leave them after one bad appointment  (if you had a bunch of great appointments with them in the past) Because doctors are human, and we all have our bad days. Sometimes the most helpful thing a doctor has said to me is “I don’t know how to help you. So let’s send you to someone who might“ or “ I don’t know exactly what’s wrong or how exactly how to help you.  But that doesn’t mean I’m going to give up on you.  Let’s try this plan first, and if that doesn’t work we will go back to the drawing board.“

If you leave appointment after an appointment feeling hopeless, why are you still going to them? You are the one who has to live with it 24 hours a day 7 days a week. You deserve help in that fight. You deserve a provider who tries, cares, and gives you hope. If a certain provider came to your mind as you read this, one who isn’t doing the things I listed above. It just may be the time to switch. 

Never stop advocating for yourself. You deserve the best care possible.