Why Does It Feel Like You Have to Be Your Own Doctor?

Merry
Last Updated: November 11, 2024

Should you be your own doctor? (Do you even want to be your own doctor?) A celiac’s stories from the dermatologist, allergist, and (yay) the gynecologist.

Coming at you in the aftermath of a panic-spiral during which there was much Googling and worst-case-scenario-ing of everything that can go wrong with my body.

Hi, it’s me—your friendly neighborhood celiac.

To date, I’ve only met one other person with celiac disease (other than my dad (Thanks, Dad, for passing on the faulty genes. Love you.)). She was a fellow American I met by chance at a gluten-free perogi restaurant in Wrocław. (In case the stars align and someone with celiac disease who also happens to be visiting Wrocław reads this, the magical restaurant in question is called Manufaktura Bezglutenowa. You’re welcome.)

Celiac disease is an auto-immune disease from which an estimated 1% of the world’s population suffers (Source: National Institute of Diabetes and Digestive and Kidney Diseases).

And ICYMI, it’s not just the hipsters upsetting the Boomers by asking for gluten-free bagels1 at their local delis; diagnoses of celiac disease are on the rise with incidences increasing year over year by 7.5% for the last several decades (Source: The American Journal of Gastroenterology).

Experts don’t really know why yet.

Don’t worry—this is not a post about celiac disease. It’s a me problem, and I don’t expect other people to care. But if you’d like to learn more about celiac disease (or if you’d just like to add to your internal encyclopedia of random facts to (attempt) to dazzle people at dinner parties), you can begin your Internet research spiral here with 20 Things You Might Not Know About Celiac Disease. (All the cool kids are reading it these days.)

So what’s my point?

I’ve had celiac disease my whole life, but I didn’t get a diagnosis until I was 23—I had to figure it out basically on my own.

For anyone who’s ever spent time worrying about their health, stories like these aren’t unfamiliar.

In fact, an updated 2023 report issued by the U.S. Department of Health and Human Services’s Agency for Healthcare Research and Quality confirmed that ~5.7% of patients receive an incorrect diagnosis.

Now certainly, medicine is not an exact science, and it’s natural that there is a margin of error. Still, it doesn’t make the plight of those who suffer from these incorrect diagnoses any less.

But incorrect diagnoses are only one part of the problem.

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It is not the error in diagnosis that grinds my gears so much but the lack of one.

Every since I was a teeny-bopper, I regularly visited the dermatologist. It was pretty much an annual pilgrimage to try to find a solution (or even the proper name) for the rash that has long plagued me.

A solution was never found, though the attempted explanations were aplenty—and often ridiculous.

“The bumps on your knees? It’s just irritated skin from shaving.”
“The bumps on your spine? It’s just friction from moving because you’re so thin.”
“The bumps everywhere and anywhere else? It’s because you’re very fair-skinned. Just put some hydrocortisone cream on it.”

I’ll refrain from regaling the many other symptoms I experienced from childhood to adulthood because:

kind of irrelevant
gross

I will, however, highlight one other symptom because I find it the appropriate mix of relevant, infuriating, and comical:

For background, one of the more dire consequences of celiac disease (which can then lead to its own litany of negative consequences) is malnutrition. TLDR: If you have celiac disease, your intestines get damaged when you consume gluten (or gluten-contaminated food), which means they can no longer adequately absorb nutrients from the food you eat.

(So despite having the good fortune to have been raised by a mother who cooked three square meals a day every day in our charming house with the white picket fence, I was woefully malnourished as child (which, in hindsight, is quite obvious since I was always so freakishly thin no matter how much food I ate)).

I digress.

This absurd skinniness was always waved away by doctors.

“You’re a late bloomer.”
“You’ll have a growth spurt soon.”
“You just have a fast metabolism.”

All of this seemed fine. Until I was about 21. I told my general practitioner:

I don’t understand. I’m hungry ALL the time. I eat more than my three male roommates. You said I just have a fast metabolism—but I’m not a teenager anymore. I feel like there’s something wrong. Shouldn’t I start gaining weight by now?

The response:

“Oh, lucky you—you’re so tall and thin and can eat whatever you want. You’re like a model!”

…

(That’s the sound of my eyes rolling back into my head.)

Please consider: My intention is not in any way to villainize the doctors I consulted. I actually liked my general practitioner a lot, and I’m certain they were all trying to help.

But that doesn’t take away from the fact that all my calls for more information were largely cast aside.

A similar experience followed at the gynecologist.

Despite a history of frustrating appointments, I have always retained a lot of confidence in doctors.

I respect their profession. I believe that we rely on them as a society. And I definitely don’t think my rudimentary research online can yield better results than their many years of study.

That’s why I always ask for their help. I just wish it was answered more.

For example, when I needed birth control and my regular gynecologist was booked for awhile, I headed to Planned Parenthood. I wanted to try a different method—one more invasive than the pill I’d previously used. And as I believe anyone would be and/or should be when a physical object is going to be implanted into their body for years on end, I was nervous and wanted to learn more about the insertion, removal, and side effects before proceeding.

How did they help? The bored-looking nurse handed me a couple of brochures and then pretty much immediately asked if I was ready to proceed, even though there had clearly been no more than a few minutes for me to read the brochures and develop any questions.

I’m not going to lie—this annoyed me. But, as I always had, I trusted the medical professional and proceeded. After she inserted the implant, she gave me a little piece of paper telling me when I would need to replace it, which I promptly stashed in my wallet for safekeeping behind my driver’s license and then recorded the date in my calendar with a reminder three months in advance to make an appointment.

“Easy!” I thought. “How great!” (How wrong, I know now that was.)

Fast-forward almost three years later and I was at the gynecologist for a routine visit.

“Yes, yes,” the doctor read my chart, ticking off the regular what-have-yous. “Looks like you’re coming up on getting the implant out soon.”

“What?!”

I’ll spare you from reading a detailed account of the stressful events I’m now reliving. But here’s the skinny:

Planned Parenthood verbally told me the Nexplanon implant is good for five years.
Planned Parenthood gave me written literature that says the Nexplanon implant is good for five years.
Planned Parenthood (to this day) proclaims on their website that the Nexplanon implant is good for five years.
My gynecologist told me (in time, fortunately) that the Nexplanon implant is, in fact, only good for three years.
Nexplanon’s own website says it is, in fact, only good for three years.

According to Nexplanon:

According to Planned Parenthood (*shakes fist*):

My visit to the gynecologist ended in a stressed panic as I tried to figure out what to do since I had a one-way ticket for international travel in a matter of days and didn’t have an immediate chance to get the implant removed.

It all ended up okay, but my disappointment in and anger towards Planned Parenthood endures.

I believe in supporting women’s right to healthcare. I have donated money to Planned Parenthood in the past. Their whole message is:

“We’re here to help.”
“Ask us anything.”
“Trusted care, every step of the way.”

Not only did they fail to deliver the guidance I asked for (beyond handing me a few brochures in a rather bored way), but they told me inaccurate information and—worse—published that inaccurate information on their website.

Now, to be fair, it is worth noting that studies have shown continued efficacy of the implant into years four and five (Source: Human Reproduction from Oxford University Press).

However this, to me, is irrelevant. If Planned Parenthood wants to fulfill their mission “to protect and expand access to sexual and reproductive health care and education” and empower women to make their own choices about their medical care, then they should allow them to make their own choices about their medical care. Provide us with all the literature regarding the efficacy of the implant, and let us make our own informed decision.

I’ll stop here because the point of this piece is not to blaspheme Planned Parenthood.

But I will die on this hill.

What other hills am I willing to die on? Subscribe to A Merry Loner and see.

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Before, during, and after, my worries about the side effects of hormonal birth control were ignored.

That was only one among many of my sagas using hormonal birth control, and it says nothing of the symptoms I experienced, my difficulty in identifying those symptoms, and the gaslighting that ensued.

I won’t stay here long, either.

There are already many stories recounting the troubles women face in receiving adequate attention for their health concerns. If you want to go down that rabbit hole, here’s a particularly good read on the subject from Maya Dusenberry for BBC: ‘Everybody was telling me there was nothing wrong.’

Why do I raise these points? Why am I TMI-ing about celiac disease and rashes and hormonal birth control? (Believe it or not, I’ve actually withheld the more colorful details.)

Because:

Too often, we have to figure out our medical problems on our own.

This is not the kind of Merry Loner I want to be. But it seems it’s the one I have to be.

It took literally decades of persistence to get someone to diagnosis me with celiac disease. (Finally, a creeping-up-on-retirement allergist2 set the wheels in motion, for whom I am forever grateful.) I knew there something wrong with me—but nobody seemed to want to listen.
It took Planned Parenthood essentially lying to me for me to realize you need to do your own homework instead of trusting your doctor.
I now face issues with my thyroid (likely another repercussion of celiac disease), and so far it’s been an uphill battle to get the answers, appointments, and treatment I need. (Source: Clinical Medicine & Research)

I, unfortunately, know people close to me who have faced similar experiences, and it makes me ponder the question:

How much of an active role should we be expected to take in our own healthcare? (Do you really have to be your own doctor?)

As with anything, it’s important to not drive blindly. I believe we’re all responsible for educating ourselves, making our own choices, and generally being the masters of our own ships. (After all, it’s all about creating happiness, no matter what life is like.)

But when it comes to medicine … yeah, I tend to defer to the (very educated) professionals and trust that they know more than I do about the detailed workings of immunology, endocrinology, and gynecology.

Is this the right thing to do? Up until now, I thought, “Most certainly.”

But I’m starting to have my doubts …

Just me? Or do you feel like you have to be your own doctor nowadays, too?

As I touched on earlier, there’s growing attention being paid to the newly-coined phrase medical gaslighting, with patients (you guessed it: largely women) reporting their symptoms and calls for help are ignored and/or devalued by doctors. Consider:

In a 2023 MITRE-Harris poll, 52% of respondents said they “feel their symptoms are ‘ignored, dismissed, or not believed’ when seeking medical treatment.”
In a 2023 survey from HealthCentral, over 94% of respondents said “their doctors have ignored or dismissed their symptoms.”

Why do so many people feel like they need to fight to get medical help? Why does it seem like our concerns are easily dismissed? And why do we increasingly feel the need to act like our own doctors, trying to problem-solve in despair from a glowing screen late at night?

I’m all for independence and advocating for yourself. But there’s a difference between being independent and being left all on your own.

1 Well, it IS just the hipster asking for gluten-free bagels—because people who have celiac disease also need these gluten-free bagels to be cross-contamination-free, i.e., toasted on a separate, 100% gluten-free (i.e., crumb-free) toaster.

2 When he couldn’t immediately think of the cause for the rash I was describing (I didn’t even have a flare-up at the time of my appointment to show him), he didn’t just prescribe me hydrocortisone cream and send me on my way. He went into his office for 20 minutes and (I kid you not) returned with a four-inch-thick book full of different pictures of rashes, one of which he pointed to and said, “I think this is what you have: dermatitis herpetiformis” (AKA the celiac rash). (And I’m happy to say he was training a younger doctor during my appointment, so there is hope his methods will continue on! )