Lessons from a Delayed Diagnosis
This past fall, I was finally diagnosed with a tick-born infection, and it took way, way more work and time to find that diagnosis than it should have.
In the process, I learned a lot about navigating the American health care system, and I wanted to share three pieces of advice for anyone else dealing with ambiguous chronic health issues:
(1) YOU ARE RIGHT.
You’re right. I know zero hypochondriacs but I’ve had a million conversations with friends and family members who aren’t sure if something is “serious enough” to warrant a doctor’s visit, who have been told that they “seem fine”, or who have been discouraged by previous doctors who didn’t believe them about a symptom. Your thing is real and deserves care.
(2) Find the right doctor.
Doctors are humans, and they can be wrong or emotionally exhausted or carry misconceptions. I collected all my medical records and realized that I’ve been seeing doctors about my symptoms since 2011. My infection doesn’t come up in a standard blood screen, and when those tests came back normal each doctor told me that I was fine. For years, I assumed that they must have considered all the reasonable possibilities and that the test results ruled them all out, and that I was being demanding and weak.
But if you are walking out of your doctor’s office questioning your moral character, you are interacting with the wrong person. Make an appointment with someone else! I promise you that there are doctors out there who will listen to you fully, trust you, and be honest with you.
(3) You can, and should, ask for what you need.
Once you get over the fear that you are a hypochondriac (or once you get a friend who can call you up every once in a while to say validating things), you probably have ideas about what could be wrong and you are 100% supposed to talk to your doctor about them, and ask for specific tests. It’s perfectly acceptable for you to request a referral to a specialist, or to do your own research about specialists in your area, make your own appointment, and then ask for your primary care doctor to send in a referral.
I had this weird fixation that it would somehow be insulting? But ultimately, you have the most information about your own health, you just need to be brave enough to communicate it.
American culture puts doctors under a lot of pressure to be 100% correct and to have a cure for everything; meanwhile, as individuals we are told to de-prioritize our health unless it is preventing us from doing our jobs. It’s really hard to take ownership of our pain and illnesses, but I hope that this advice helps.
My story is that I was bitten by a tick that carried a bacteria called Borrelia miyamotoi, probably around 8 years ago. I started to experience unusual fatigue, even on days when I wasn’t particularly active and when I was getting enough sleep. I was having headaches more often and more intensely, and I started having weird joint pains on the days when I was especially tired.
Every two years or so I would see a doctor, who would run the same set of tests for blood cell counts, thyroid hormones, and iron levels. They would all come back normal, the doctor would let me know by email instead of scheduling a follow-up appointment, and I would feel ashamed for having wasted their time. I would convince myself that my symptoms were normal, or were my fault for not getting enough sleep or exercise, or were “just depression”.
Finally, last year, I was forced to give my health my full attention when it became an insurmountable disruption to my graduate studies; I couldn’t get myself to my classes on time, I found myself stretching 1-day procedures into 4 days because I had no stamina, and I was generally giving off a negative impression of my competency that was hurting my career. I tried to impress upon my then-doctor how seriously my health problems were impacting my life and he remained convinced that it was either an iron deficiency or depression — even when months of iron pills and a note from my psychiatrist contradicted those theories.
I switched to a different primary care doctor, which I should have done much sooner. My psychiatrist and my new primary care doctor both thought that my next step was a sleep specialist; I made the appointments, but I didn’t want to wait the months it would take to complete the sleep testing because I knew my body and I didn’t think it was sleep related.
So I faced my ableist fears of a chronic illness and, despite my doctors advising me to wait, looked for someone who specialized in my primary symptom: chronic fatigue. I couldn’t find a local fatigue specialist through google, so I ended up blindly emailing a fatigue epidemiologist at my university, who connected me with a retired doctor he knew, who connected me with the infectious disease doctor who ultimately made my diagnosis.
I have friends and family who are medical professionals, I am training to receive a PhD in biomedical science, I have always had great health insurance, and I am solidly in the high-risk group for tick-born infections given my outdoorsy childhood friend group in tick-rich Northern California. Still, the process from symptom onset to diagnosis took much longer than I think it should have. And at times, it was deeply emotionally upsetting.
If it was this hard for me, I can’t imagine how many people are quietly living lives of persisting pain and illness.
Unfortunately, we all need lessons in how to navigate the health care system, and I think my health would be better if I’d learned them sooner.
Related — some reading that I did in the process of becoming braver about my health: “The Cost Of Assuming Your Doctor Knows Best”; “America’s Epidemic of Unnecessary Care” (← it’s not patients asking for too much care, and you can avoid contributing to it if you maintain ownership of your health); “Study reveals that women are literally working themselves to death”; “To Better Cope With Stress, Listen to Your Body”; “Is Medicine’s Gender Bias Killing Young Women?”; “Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”
