The Best Advice I’ve Ever Received (and Some Lessons Learned)

I posted this list as a comment on another person’s post, and they suggested I share the information with the group.

Just a quick disclaimer: everything you’re about to read, of course, comes from my own experiences. My experiences are highly subjective and are by no means representative of anyone else. I simply wish to share what I have learned and hopefully inspire others on their journey.

Context: I’m 29F and have been struggling with chronic illnesses for 20+ years. It took about 20 years to get real diagnoses for my illnesses.

The absolute best advice I ever received – and some of the difficult lessons I learned – regarding being seen by and receiving treatment from Doctor’s was the following:

1. Research your doctors and other doctors in your area. Primary care docs often refer to docs within the “network” they are in – not based on what doctor is best for you. I use US News and World Report to get my first “at a glance” understanding of a prospective doctor. I then research their educational background. Finally, I read the reviews on a variety of websites like healthgrades, etc. Reviews are the best way to really know how the doctor is with patients.

Onto the rest of the list…

1. ⁠Research your symptoms and any known or suspected illnesses thoroughly before walking into the appt.
2. ⁠Bring a known illnesses/known syndromes/known symptoms list with you, providing details that explain your history, when the symptoms started, how they have developed, whether puberty impacted them, etc etc. Have a copy for you to reference and a copy for the doctor you can provide them to keep.
3. ⁠Come with questions, and a few names of the illnesses you think you may have, and discuss those in the appointment. Best way I have found to go about it is, “I heard about “Y” disease on the news and I did some reading offhand. I was surprised to find myself reading every word because the symptoms so neatly matched my own.” Something that is more curious. The more you do it, the more natural it will become.
4. ⁠Be assertive. And be honest about your symptoms. Don’t sugar coat it or boil it down. (Be careful with pain, specifically though, since they can pigeon hole you as drug-seeking – but explain that you have pain and the form it takes and how it impairs your ability to exist day to day. Impairment of activities of daily living is usually one of the buzz words that provides a doctor with a jumping off point to start working on diagnostics.)
5. ⁠Communicate that you have been to “X” number of doctors and they have dismissed you, were unable to help (whatever your experience has been) and that you cannot go on like this.
6. ⁠Communicate the tests you have had done already, and be sure to include those and their results in the paperwork you provide to them.
7. ⁠Arrive at the appointment with a medication list, known allergy list, family history list, and any known illnesses no matter how “normal”, I.e. Asthma, etc. Having these in tow will make your appt much smoother, and maximize your limited time with the doctor.
8. ⁠Enter the appt with an open mind – at least, as open a mind as you can. It’s hard to do it after so much dismissal of your very real experiences.
9. ⁠Brace yourself that your new doctor may need to rerun tests you have already had done. All doctors want updated scans, and they want scans they ordered. It’s frustrating when you know it will come out negative, but you may be surprised. (I certainly was when a scan was redone for the millionth time and surprise- I needed surgery.)
10. Insurance will be quick to deny just about anything. Don’t let a denial phase you. Work with your doctor to appeal it. An unsettlingly high amount of the time, the insurance just wants a bunch more tests done to “prove necessity” of the procedure, treatments, etc. and they tell you that by denying your test, procedure, etc.

Finally, you have to be prepared for the inevitable: some doctors are just not a good match for you. And no matter how much research you do, you never truly know until you get in the room. And as hard as it is, in those situations, remember that you are allowed to switch doctors if you want to!

Hopefully, something in this post strikes a chord with you and inspires a new path that fits your style and needs.

Wishing all a calm evening.