Hey, You With An Invisible Illness: Stop Being Superwoman and Speak Up

If you have an invisible illness, I feel you. Here’s your homework: Be a squeakier wheel.

And to the rest of you, you probably have one of these women in your life. Listen along.

Superwoman: I know you have a high tolerance for pain; I know you can do it all, and I know you even “look good” doing it. This fools everyone, and you may not be getting the best care as a result. Maybe you’re already diagnosed, maybe not.

My mother endured Multiple Sclerosis (MS) symptoms for decades without diagnosis. Aside from an outdated MRI machine that didn’t detect lesions, appointments went like this:

• It’s menopause.
• It’s carpal tunnel.
• You look good. (Her students would call her Wonder Woman after all. Uncanny resemblance.)
• You have a neuroma in your foot.

Hey, doctor: A woman who’s had natural childbirth knows pain. When she tells you her “tingling” feels like she slapped her hands hard, it’s not from working on a computer. When she tells you it hurts to walk because it feels like her feet are bound up and shoved into tiny shoes, she doesn’t need better shoes — or surgery for a “foot problem.” I get it, people get unnecessary tests. But please, doctor, know when to take a closer look.

Back to you, Superwoman. This isn’t an alarmist post to run to the doctor. It’s about chronic symptoms. It’s the gut feeling you have that this isn’t right, even though you can keep your world going. Trust yourself. And when you finally admit you need to speak up, don’t hold back for selfless reasons. When things got bad for my mom, she waited until after her children left home to get the diagnosis she knew was coming (either a brain tumor or MS). 

There’s a mix of denial and optimism that things will get better if we keep on quietly trucking. My mom will keep hobbling about town with her classy lucite canes, and neurologists will look at her and say, “Well, you’re still walking!” Yes, she’s walking, but it hurts. And she feels she may reach a point where she cannot.

Here’s the thing. She’s started speaking up and isn’t getting anywhere.

I sat with her in an appointment where she came out and said she didn’t believe the doctor was giving the same quality of care he’d give his wife. Taken aback, the doctor assured her he is and sent her home with nothing new.

So maybe you’re not speaking up because you feel you’re out of options. Keep talking anyway! Even if it comes out “bitchy.” Suggesting treatments you’ve read about isn’t disrespecting medical professionals. At the end of the day, we all have the same goal to get better, right? If we keep talking, we’ll connect with people who can help in ways we never imagined. We already are here.

Superwoman, it’s your time to fly. Let’s talk about you. One, two, three… Go.

Note: I directed this toward ladies because I am one and felt most comfortable generalizing to that gender… though each of us is clearly unique.