Why your doctor doesn't think you have symptoms

Is this how your doctor looks when
you tell him you feel fatigued, have
headaches, have bone pain, or just
feel crappy? 

I've been at this blog and Facebook page for over a year, and ET patients commonly complain that their doctors don't believe they have symptoms ... even though our symptoms are pretty well documented in "the literature," as the scientists say.

In catching up on my ET reading, I have some theories about this:

ET patients are most often diagnosed in their 50s and 60s. The fatigue and aches that can be a symptom of ET may be waved away as age by both patients and their doctors. And, to cut the doctors a break, it can be almost impossible to determine whether our ailments are age or disease related.

Doctors may also be skeptical about our symptoms because we aren't complainers. I was struck by an MPN specialist in one of the many YouTube videos available about ET, who noted that his patients seemed to be asymptomatic before their diagnosis and then, after they learned they had ET, claimed to have ET symptoms. It was pretty clear that this doctor felt his patients were rather suggestible; they only starting having the symptoms AFTER they learned what the symptoms were. 

But from the patient's point of view, the symptoms of ET are often vague and generally low-level. They also vary in intensity. They're not on the front burner like a case pneumonia or a broken bone. These aren't the kind of symptoms that send you running to the doctor when you're trying to deal with your kids, take care of elderly parents, hold down a job, and keep up the house. Who's got time to see the doctor?

By the same token, how many of us have come home from work tired, chilly, feeling like we're "coming down with something"? How many of us feel better in the morning, only to start the same cycle of feeling on the verge of getting sick later in the day? And how many of us have taken a pass on evening activities or visiting with friends on the weekends because we feel weary? Or tried to work through the fatigue with a lot of coffee, only to crash when the caffeine wears off?

Yes, I see you raising your hands saying, "me, me, me!"

I'm not sure how to persuade a doctor who is already convinced that ET is asymptomatic (at least until you have a stroke, internal bleeding, or ischemia) that we sometimes feel pretty bad (unless we're on chemo, the side-effects of which doctors will take seriously).

And, to tell the truth, I'm not sure what I would want the doc to do about my symptoms other than maybe admit it's not all in my middle-aged head. I do not feel that I need opioids or other heavy-hitting pain meds, including medical marijuana. Those would make me more tired and loggy than I already am. And, while I wrote awhile back how much I enjoyed a couple of weeks on Prednisone for a bronchial infection last fall, long-term steroid use has unpleasant side effects. Yes, it can help with pain and make you zippier. But, long term, it can make you gain weight, mess up your libido, play with your emotions, and cause hair loss and growth in all the wrong places. 

There just aren't good palliatives (at least right now) for symptoms like ours. Eating right, getting sleep, maintaining healthy weight, and taking over the counter pain relievers (get your doctor's advice about taking n-saids that can cause bleeding in those already taking aspirin therapy) are the best medicine for now. 

I do plan to ask about symptom control when I go to the MPN Advocacy & Education International session March 30 in Novi, Michigan. (See a complete list of events, including one in Melbourne, Australia, in February, here.) If you have questions you'd like me to take to the event, please post them here or on the Facebook page.

Meantime, be well!

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