When Doctors Don't Believe You

I heard from another person with chronic myeloid leukemia today that she was suffering from non-stop stomach ailments a year into her diagnosis. Her doctor was no help, and told her it was not from the tyrosine kinase inhibitor she is taking.

He offered no further solutions or suggestions.

"Is it in your head?"

In fact, she got the sense that he thought it was in her mind.

Mind you, this patient is age 24 and also experiencing crippling bone and joint pain. To hear that her problems are being dismissed makes my blood boil.

(And my blood has leukemia in it, so no one wants it to boil over, believe me).

Get a second opinion

Instead of putting up with this nonsense, several people urged the patient to seek out a CML specialist. Even if it means traveling some distance, it is probably worth it to have someone with an inkling about this rare type of leukemia to treat you.

I agree with that advice and offer this piece of my own: don’t let anyone downplay what you are going through—ever.

Don't let them dismiss what you are experiencing

If others don’t like you bringing up these problems in front of them, too bad for them. That goes for friends, family members and physicians. Doctors are humans, too and, though their profession is admirable, they need a little humility and it goes without saying they should offer understanding to their patients.

Communication is a two-way street

People with chronic illnesses are just as worthy to be listened to as the people whose profession it is to help them.

It should be a two-way street.

If your words fall on deaf ears, it’s time to take yourself elsewhere.

Keep talking

Throughout my seven plus years journey with CML, there have been occasions when I started to feel like it was futile to keep bringing up the side effects that are side tracking my quality of life. But, that didn’t shut me up.

More than once, I’ve been shuffled between dermatologists, allergists and my primary doctor and CML specialist to deal with skin issues—rashes, flushing and more—only to never get a concrete answer as to the cause of the problem.

What I did get — after a while — was advice on ways to calm down the symptoms.

The same held true for stomach problems. During this particular go around, I was subjected to test after test with no obvious answers appearing.

I clearly remember laying on the table and my CML specialist telling me that nothing was showing up in test results to explain my pain.

Sometimes the answers aren't obvious

I remember him saying, “It’s at this point when patients think the doctor doesn’t believe them. I’m telling you, Susan, that I believe you, and we’ll figure it out.”

There was a happy ending to that episode in that I was referred to a great gastroenterologist.

Five years later, the stomach woes have returned with a vengeance so here we go again.

Passing the baton

I like it when doctors admit they are not experts in a certain specialty and pass the baton off to someone better qualified.

And, there should always be a coordinator, either a primary doctor or your oncologist, to keep abreast of what’s going on overall and provide needed follow up and communication with other providers.

Important to build trust

Most importantly, you have to trust the doctor you are seeing who essentially has your life in his/her hands.

Very early on in my blood cancer diagnosis, I remember asking my hematologist/oncologist about what I called “zappy pain,” in my legs. I wanted to know if the pain was a side effect of the leukemia or the TKI drug I was recently put on to treat it.

“Both,” he replied.

Unlike my acquaintance, my question was not dismissed or left unanswered.

You have a right to be heard. Don't let anyone try to silence you.

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