Invisible Illness Week 2015: I Fight Against Ignorance

I’ve told this story before, but I  think it explains invisible illness so well that I think it’s worth repeating. Hopefully you take away the lesson that when you look at a person, you probably aren’t getting the entire picture.

Our daughter was three years old and just starting to stabilize from chronic conditions. Her breathing was so difficult back then that she was on steroids for over a year. She’d been so sick her first year she had been almost vegetable-like. Her thyroid was off. She didn’t have one doctor, she had four, plus three therapists, a nutritionist, and one early intervention advocate.

And, right.

Me.

We were at the local grocery store. My eight year old was walking along the cart and our three year old was in the child seat, laughing and oblivious at what was to come. A woman, who at the time looked to be in her seventies, grabbed my wrist. She said,

“You are killing that child.”

I knew exactly where this trip was going.

Our daughter, then, and even now, as her diagnoses multiply, is obese.

“I am a nurse, and I’m telling you, you’re killing this child. You are giving her diabetes.”

While she is arguing, I try to interfere. “You only see a small part of the puzzle.”

Another thing I tried to say: “She has a team of doctors.”

Then there was, “We are working on her together.”

The woman would not stop and a crowd started to gather. Over and over she reminded me she was a nurse, and that my child was fat because of me. It didn’t matter how many times I told her there were several health issues in place that we were working on.

Finally, I’d had enough.

“M’am? Do you know Jesus? Because the way you’re treating me, I’m inclined to think you don’t. Let me tell you, I do know Him. And when I was pregnant with this miracle, He promised me she would be an overcomer. And I stand on that promise. Good day.”

I shook my hand to rid of her grip and got out of there as fast as I could.

That experience rocked me so hard I still tear up from anger when I dwell on it. Okay, like right now.

What that “nurse” failed to consider was my eight year old. We got home and he asked me if his sister was going to die. Because what that seventy-something “nurse” didn’t know was when his sister was three months old, she was prescribed the wrong dose of a medicine she never should have been prescribed. Her pulse was gray when we arrived at the hospital and we were told by other “great” nurses that we’d probably be planning a funeral, not taking her home. So to hear “die-abetes,” imagine what was going through his young mind.

That’s ignorance—to judge a situation and have the audacity to grab a stranger and go off on it. Yes, I still look up when I hear a crying child that won’t settle, but these days I wonder if they are on the autism spectrum or having a bad day or both and instead of thinking about a bratty family, I pray for them. Because I’ve been there.

One of the doctors on her team not long after that episode saw my two kids together, very drastic in weight, and asked if people say things. I started to cry and nodded. He told me I have to let it slide, that people are rude and don’t understand what we do. He explained that he has twins. One is very healthy and the other has issues that again, at face value are only part of the puzzle. They were at the mall and he walked away to get a pretzel. When he returned, his wife was crying. Someone went up to her, looked at the twins, and saw the second twin in a stroller when he was old enough to be walking by the stranger’s standards. The stranger looked the mom in the eye and asked, “What? Did you drop it on its head?”

I cry every time I think about ignorance like this. And then I get so angry.  Invisible illness has so many facets to it. How dare we claim to know everything with a glance at a stranger?

But as a society, we do.

God, forgive us.