Neurodivergent Women and Masking:Are We So Good at Masking That No One Can Tell When We’re Sick?

I had a session the other day that really got me thinking about masking.

One of the things that comes up in my work with neurodivergent women is how difficult it can be to ask for help. Not just asking for it, but actually allowing ourselves to receive it.

We can be struggling, overwhelmed, completely falling apart, and still feel like we need to get ourselves together before anyone sees us.

And I get it. On so many levels.

Because I’m also dealing with trying to find a medical provider who can treat me without bias. Someone who doesn’t look at a woman who managed to take a shower that morning and say, “Wow, you look fine.”

I’ve been telling my best friend that in every photo of me since my baby was born, I feel like I look a mess.

I’m wearing leggings and something oversized. My hair is pulled up, usually not even combed. It feels like a daily walk of shame.

And yet, here I am in the ER with a 105-degree fever, throwing up, and the ER doctor writes in my medical records that I don’t look sick.

Seriously?

So now I’m wondering, what is this?

Is this the medical system?

Are healthcare providers so used to seeing people who are visibly declining that someone like me appears okay?

Is this masking as a woman?

Making sure you’re put together because, as someone who grew up in the ’90s, you’ve spent your entire life internally comparing yourself to Katie Holmes and Britney Spears?

Somewhere along the way, we learned what we’re supposed to look like. Even when we’re not feeling okay.

Or is this masking as a neurodivergent woman?

Practicing since kindergarten.

Being the good kid. Showing up put together, even when you’re a mess on the inside.

Trying so hard to sit still and pay attention, even though you’re fidgeting, daydreaming, and have absolutely no idea what’s going on.

But you’ve gotten down the “I’m paying attention” face.

You’ve practiced it for so long that it’s practically automatic.

And now, it’s all blowing up in my face.

I’ve been sick for months. I’ve lost 20 pounds.

My primary care provider, three different urgent cares, and multiple other medical appointments. They all keep telling me the same thing.

“Oh, you have a kid in daycare. You’re going to get sick.”

Okay, but here’s the thing.

My kid got an antibiotic. He’s better.

My mom caught it twice. Two rounds of antibiotics. She’s better.

Meanwhile, I’ve gone from a runny nose and a cough, to what I called the “summer flu,” to vomiting.

Walking my kid to daycare in the morning and having to stop to throw up on the side of the street.

And I keep getting prescribed nasal spray.

I’m so tired.

But you get up and you keep going because you don’t have a choice.

And doesn’t that describe so much of the neurodivergent experience?

We’re burnt out. Exhausted. Working so hard just to keep up with society.

And society doesn’t slow down or adjust for us.

I’ve been seeing more and more kids in my Minecraft groups who are being homeschooled.

And honestly? Thank goodness.

Finally, an educational environment that can adjust to how a child takes in information, processes it, and learns.

But that’s a tangent I could easily spend another hour talking about.

Back to masking.

I think about how much energy we spend appearing okay. How often we’re struggling internally while still managing to show up, do what’s expected of us, and take care of everyone else.

And how difficult it can be for someone on the outside to recognize that we’re struggling when we’ve spent our whole lives practicing how not to show it.

All of this to say, sometimes I show up for a session, and I’m right there with you.

And I truly get it.

Full Video Transcript

I wanted to come on and do a little video for anyone else who can relate to being a woman and feeling like healthcare is just a fight to be taken seriously. And masking, and how good we are at masking.

So, I’ve been sick for the last six months. I’ve been to so many doctors, every other week. I’m better, and then I’m not, and then it’s worse. It’s just been a lot.

All summer long, I had what I called the “summer flu,” which completely knocked me out. I would go to my primary care doctor, and they’d prescribe Flonase or tell me to take Robitussin or Sudafed or whatever.

In the meantime, I’m dragging. I’m throwing up. I’m walking around with no appetite. I’ve lost 20 pounds.

It’s like, okay, yeah, Sudafed’s going to help that.

It got to the point where I went to urgent care, and urgent care tells me, “Oh, you should go to the ER. Your temperature is 105. We can’t do anything for you. Go to the ER.”

So I go to the ER. I’m projectile vomiting. My temperature is 105. My labs are crazy. I have strep throat. I have an infection.

And I read the discharge paperwork because, I don’t know, I just always do.

The ER doctor writes, “She looks well.”

Like, really?

I mean, I showered today, but I’m in my pajamas, throwing up in your bed, and you wrote that I looked well.

Are we just that good at masking?

At this point in our lives, have we masked so much that we could be vomiting, have a 105-degree fever, and someone looks at us and is like, “Yep, she’s fine. She’s got it together.”

It just blows my mind.

But at the same time, if I really stop and think about it, maybe part of that is true.

Maybe we’ve gotten so good at masking by the time we’re 40 that no one around us, not even an ER professional, really looks at someone and thinks there’s anything wrong.

And all the doctors I’ve seen pretty much immediately tell me, “Oh, you’re a mom. Oh, you have a one-year-old. Your one-year-old’s going to get sick, so you’re going to get sick.”

My one-year-old’s not sick.

Finally, after the ER, I got a round of antibiotics, and I’ve been relatively better, but not all the way better.

I still have a runny nose. I still have a cough. I’m still coughing to the point of throwing up. I still have no appetite, and I’m still feeling like I’m going to pass out most days.

So I tell my primary care doctor, “I just think I need some more antibiotics.”

And she’s like, “No, it’s chronic.”

Chronic?

It’s only chronic because I can’t get a prescription, and over-the-counter medications aren’t curing something.

My blood sugar was off. My thyroid was off. I had an infection in my blood.

Obviously, Robitussin isn’t going to help that.

But what does she do?

She writes me a referral for a neurologist, an ENT, and something else that I don’t think I even bothered to follow up on.

So I went to the ENT today, and he’s like, “Okay, we’re going to put this camera down your nose and check your throat out.”

Like, this is where we’re at?

We’re at a camera down my nose because I can’t just get an antibiotic.

And then he says to me, “Well, good news. You don’t have throat cancer.”

How the [expletive] did we get from sinus infection and strep throat to throat cancer?

I just want some amoxicillin, buddy.

I’m just blown away.

I’m sitting in that appointment, and I outright said to him, “I think if I were a man, I would have just gotten a prescription months ago, and I wouldn’t even be sitting here.”

It is absolutely exhausting to continue to go to all of these doctors just to be like, “Yeah, here’s some Flonase.”

So this guy’s like, “You’re right. You know what? I think speech therapy.”

Okay, so I don’t have throat cancer. We’re going to jump to speech [expletive] therapy because I have a runny nose, a sore throat, and I’m throwing up?

I’m just bewildered.

So I left with a prescription for steroids, a nasal spray, and a referral for speech therapy.

I still have a referral for a neurologist. I don’t even know why I need to see a neurologist.

It’s just dumbfounding.

And I read this guy’s notes, and he also says, “Looks well.”

Dude, my shirt was on inside out at the appointment, and I didn’t realize it.

I’m sure you did.

But I look well.

Maybe it’s just masking. Maybe it’s just masking.

Two weeks ago, I wore my pants backwards almost all day long. Didn’t realize it until I went to the bathroom.

Hours!

I was out. I was at the indoor playgrounds. Came home.

Obviously, my one-year-old didn’t tell me, but neither did anyone else.

But we look fine.

We look fine.

If you are also fighting with the healthcare system, drop me a note. I need some advocacy tips.

It feels like such a crazy use of insurance, and I can’t believe insurance is approving these claims.

It makes me