‘Resting Niceface’ Made My Invisible Illness Go Undiagnosed for 25 Years

Doral Editor

6 years ago

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Yesterday, I went to a doctor’s office that I hadn’t been to in months.

“How’s it going?” I asked the woman checking me in.

“I remember you!” She replied. “You were this nice last time as well. It’s so good to see you again!” She seemed genuinely relieved by something I had done, but all that happened was a normal greeting.

I smile a lot. Not because it’s my favorite — though I certainly don’t mind — but because my face just does that.

Strangers frequently overshare with me and then say, “I don’t know why I told you that!” I regularly get stopped in stores because people think I work there. I am trusted with the belongings of random people. All of my roommates wind up calling their pets “traitors” after I move in. Children tend to adore me, even when I’m annoyed at their presence. Everyone thinks I have a crush on them.

Like Buddy in Elf, Hank Hooper in 30 Rock, and all blonde women in Bechdel-failing movies, I have Resting Niceface, the opposite of the more well-known Resting Bitchface. It’s generally an awesome thing to have. People smile back, for one thing — that whole sugar/vinegar thing is true! Men rarely demand I smile because it’s already sitting there on my face. People are usually comfortable with me. I get lots of hugs.

But my Resting Niceface also causes confusion. Acquaintances are often taken aback when I don’t smile. People also sometimes don’t listen to my words. More than once I’ve expressed concern about something and had people actually respond like I’d said something positive. A couple of guys have been bewildered when I broke up with them — even after I repeatedly told them I was pissed and felt like I wasn’t being taken seriously.

So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of pretty severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was fine, so I figured that they must have been through something similar and that these things were normal.

This phenomenon has also played a significant role in why I was just recently, at the age of 33, diagnosed with an “invisible illness” that I likely started showing symptoms of when I was eight. I vaguely remember asking a pediatrician what was wrong then after a test for ulcers came up negative. He looked at me as if he could assess my diagnosis from a glance at my face and said, “Oh, probably nothing. You’ll be fine.”

At least as a kid and teenager, my parents took me to a doctor when symptoms popped up, garnering misdiagnoses of asthma, hypoglycemia, and a trauma-induced mental break. But out on my own, I turned to friends with my symptoms. They assessed me much like that doctor, looking at my face and saying, “I’m sure you’re fine.”

So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was okay, so I figured that they must have been through something similar and that these things were normal.

My symptoms morphed over the years, transforming into what looked like a frequent flu in my late 20s. I’d show up at work after taking time off, feeling miserable but apparently looking just fine. Several bosses accused me of faking it, and I lost two jobs due to their suspicions. (Others called me a trooper and told me they appreciated my positivity. It’s a matter of perspective, I guess.) Doctors told me it wasn’t the flu, but most of them too were “sure I was fine.”

I’d reason away the symptoms, chalking them up to my lifestyle choices or telling myself I was just being a baby. I convinced myself it was just a super-duper frequent flu. I told myself that dizziness was very common and forgetting your close friends’ names was normal — just a brain fart! I figured that physical activity was simply not my forte, that some people don’t like moving — ignoring that I was once a competitive athlete. I figured that I was just clumsy and that’s why I was constantly dropping things and tripping — ignoring that my sport had been gymnastics. I decided that I was just allergic to everything, and that’s why I had random rashes and swelling. I blamed sporadic but extreme irritability on both birth control and obnoxious people.

For a long time, it was easy to believe I was fine.

So I groggily adjusted to the new normals, to new mysterious pains, to new frequent low fevers, to new levels of confusion. It wasn’t until about a year and a half before I became homebound ill that “agreeing I was probably fine” turned into straight-up denial.

The flu-like symptoms, extreme tenderness, debilitating fatigue, and tear-inducing “aches” started crashing in on me most nights, accompanied by a tingly pain. I turned into a dreadfully flaky person, canceling on people at the last minute due to my health. Then I stopped making plans altogether. And not long after that, I had to stop working too.

Throughout, my Niceface kept confusing doctors and assuring folks when it needed to be conveying urgency to them.

Eventually, after nearly 30 years, I finally got a diagnosis. Methylenetetrahydrofolate reductase mutation, or MTHFR for short, is a relatively common genetic mutation that is often innocuous — but some types of mutations are more health-adverse. It can lead to heart troubles, infertility, autoimmune disorders, and other kinds of disease. For me, the manifestation was a severe B12 deficiency — nearly low enough to kill or paralyze me.

A year and a half of tests after the B12 revelation, I was also diagnosed with fibromyalgia, another disease of the nervous system.

With the help of a complete diet change, gradually increasing exercise, a move to a hotter drier climate, and many other efforts, I’ve made a stunning recovery. I went from being on near-complete bedrest to now working a part-time job and freelancing on my days off.

I’m still a long way from where I’d like to be. Very tiny amounts of activity still exhaust me. I have absolutely no social life; I work, I rest, and that’s about it. I still have talking troubles from time to time, suddenly getting slurry and confused. But I’ve come so far, especially since getting diagnosed. And maybe it’s just the optimistic personality that so often comes hand-in-hand with Resting Niceface, but I bet I’ll make a total and complete recovery.

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This story by Meg Hartley originally appeared on Ravishly, a feminist news+culture website. Follow us on Twitter & Facebook and check out these related stories:

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