I’ve made many mistakes with my health care. Of course, we all do – if we are honest. But some I made ended up having a disproportionate impact – and a negative one – on my health. Things that cannot be fixed. I live with that. But I want YOU to learn from them. These six things are what I’d do differently.
1. It’s YOUR health – be your own best advocate for it
I should have been more assertive with my doctors. (Okay. Get the laughter out of your system. I understand. Even if you don’t actually know me, you probably have a fair sense of who I am by now. And the idea of me – ME! – not being assertive with my doctors must make you shake your head in disbelief. Well – BELIEVE!)
Like a lot of women, I didn’t start out with a firm tone of voice, I had to learn it. But I also was fighting against centuries of cultural preferences. Tradition said a “lady” needed to use softer, “sweeter” speech so as not to be seen as too demanding (or something) by others.
When a doctor would brush off my comments about symptoms, or my concerns, I might make a final plea, but then would let it drop. And leave feeling frustrated and unheard. And ultimately more frightened each time as I got progressively sicker. (Read about how few patients/primary caregivers feel able to speak up about a problem during a medical emergency or hospitalization. Could you speak up in a medical situation? Studies say maybe not)
Lesson learned: I lowered my vocal register, the same way I learned to use a firm handshake: practice. It’s astounding how often people are persuaded to go along with your idea, and, in general, you get more respect from something so minor. It took some practice, but the first time I used it in a meeting and then didn’t get railroaded by the men, I knew it was a skill worth developing.
2. Keep pushing for answers
When I first moved to DC and began having more asthma attacks while my medications seemed to lose their effectiveness, I didn’t push hard enough for answers to “Why? What’s going on?”
Later, I passively put up with more and more prednisone (and antibiotics), while the side effects worsened, and my doctors minimized my concerns and my questions. And I accepted that treatment because they were physicians and “much smarter than I was, and would never do anything that would hurt me!” (Boy, have I changed! Too bad it took all this to do it.)
Lesson learned: They are human and make mistakes, too. If you sense that something is off, that you aren’t getting better, your doctor isn’t listening to you, a medicine your doctor insists you must continue is making you sicker – GET A SECOND OPINION!
3. Get second opinions, and third or fourth
I needed answers from others in addition to doctors. I should have hired an environmental engineer or another certified inspector to evaluate the apartment for any problems I was unaware of – even if I’d had to borrow the money and pay for it myself!
Had I done so promptly enough, I might even have been able to get remediation or moving expenses covered under my renter’s insurance or the landlord’s master policy before mold was excluded in DC.
I’ve known people who developed serious problems after working in “sick buildings.” If they had paid for their own environmental engineers or inspectors of their office space, they might have had much stronger cases for compensation and disability, but they didn’t – put off by worry about potential cost or nervous about how it would be received by employers (and the insurance company).
Lesson learned: Gather the best impartial data you can – you never know where the key may lie.
4. Don’t stop searching for answers
When the doctors my then-internist referred me to were unsatisfactory, I should have asked everyone I knew for referrals to their doctors.
I should have seen a gigantic red flag when the tests performed by that internist’s colleagues turned up no clear diagnoses or explanations. They weren’t the least bit curious as to why my problems persisted. When they didn’t question the medications I was on, or even have me return in a month or two for follow-up, I should have gone elsewhere immediately for new opinions. And I should have thought earlier of going to one of the medical schools.
I should have done even more of my own research into asthma and chronic steroid use. Although many of today’s asthma breakthroughs were unknown then, the research was in its later stages and being reported in national and international medical journals and at conferences. The research wasn’t easily available on the internet, but I live in DC, just miles from NIH and the FDA, or the Institute of Medicine.
As a former journalist, I still have skills at ferreting out information – I should have applied them to my health. Johns Hopkins, my graduate alma mater, has one of the best medical schools in the world. Although it is in Baltimore, 45 miles isn’t much of a trek.
But I was so exhausted by my medical problems, just surviving every day was almost more than I could bear. There wasn’t any energy left for poking around to find answers. I also mistakenly trusted that my doctors were doing that. They weren’t.
Lesson learned: Keep searching for answers. Read. Talk to other people. Join REPUTABLE medical communities online. Take notes. Lots of notes.
5. Always know your test results and their meaning
A year later, when I went to MFA for a consult on my thyroid issues, my new endocrinologist, Dr. T, also questioned me about my diabetes. He was particularly concerned that I didn’t know my A1c. (The A1c is the standard quarterly test showing how well-controlled one’s diabetes is. My former internist had never mentioned the test to me, if he had even done it!)
Dr. T sent me to diabetes classes immediately. Prednisone makes diabetes incredibly difficult to control. But since I’ve been trained, my blood sugar levels are much better. A diabetes nurse practitioner works closely with me, especially when I’m sick, to help control the roller-coaster highs and lows. I’m lucky that so far, I haven’t had any of the worst aspects of uncontrolled diabetes. My heart, circulation, and eyesight have not affected by it yet, but are carefully monitored nonetheless. My issues with neuropathy are minimal and related to steroids, predating diabetes by more than a decade.
Lesson learned: Know your test results and what they mean. And take every opportunity available to learn more about your medical conditions and diseases. It only helps you.
6. Track your results
Also, for years, doctors would only tell me the results of tests if it were serious and a follow-up was needed. I’d sometimes get brief notes after mammograms or pap smears telling me that they were okay. Now I get the results in my EMR, where I can also look up details about the tests. These days I’m impatient for my doctors to review my results first, especially of issues I monitor closely to adjust diet and supplements.
Lesson learned: Know your regular and specialty tests, know the normal and abnormal results, and know what to do if your results are off. And at the first sign of prediabetes or diabetes (or any major chronic condition), get into a training program and proactively make any changes recommended.
These were careless mistakes on my part. I was overly afraid of the cost, terrified my insurance wouldn’t cover everything (and yes, I’ve been wiped out financially since by my medical problems). But my fear of cost was a misplaced concern.
I should have let NOTHING be prioritized over discovering the root causes of my medical problems or ensuring my health. If I’d had to borrow money to pay for the medical work-ups, I should have done so, or set up a payment plan. Because once your health is lost, it can be lost forever. And it wasn’t as if I started out with the most robust health.
Now read about 10 lessons from doctors.
