During dinner recently, my ten-year-old son Ryan told me his fifth-grade class was learning about communicable diseases. It was a hard word to say, and he struggled to pronounce it correctly. We talked about what he had learned: communicable diseases are infectious and easily passed from one person to another. He hesitated, and I sensed there was more coming.
“Does yours have a name?” he asked.
“Yes,” I said.
He’s asked me before, but my reply has evolved over time as Ryan’s gotten older and his level of understanding has deepened.
This time, I took a deep breath and said, “It’s technically an autoimmune disease. That means my body attacks itself from the inside. You can’t see it happening. It’s invisible.”
He stopped eating, looked right at me, and asked, “How did you get it?”
He’s also asked that question several times over the years. My answer never changes, and though it’s the only one I can give him, I never feel like it’s good enough.
“No one knows.It just happened.”
“And Ryan,” I continued. “It’s not communicable. There’s no way you or Daddy could catch it from me. No matter how much we touch, or kiss, or hug, it’s not a communicable disease.”
I wasn’t sure if he was waiting for that reassurance, but I felt like I had to give it to him. That was the only thing I really could give him.
In 2010, I woke up with my left calf blown up like a balloon, bright red, and unable to bear weight. I was hospitalized for four days with what doctors believed was a bacterial infection. After being released, I relied on a walker and wheelchair for about a month. Because Ryan was only two at the time, the simplest explanation I could give him was that I had a boo-boo in my leg.
The swelling went down, and I regained the ability to walk, yet my legs weren’t the same. At that time, we didn’t really know what was wrong with my legs, except that I felt pain and fatigue, predominantly my left leg. And we had no idea that this was not a temporary illness, but instead the beginning of my life with an invisible disability.
And while I was terrified of what the doctors were testing for—including leukemia, cancer, and multiple sclerosis—I was just as terrified at the possibility that our son was in danger.
By some standards, Ryan was a “late” walker, and I was having trouble with my legs. Was there a connection? Was his health in jeopardy? And each time, that answer was definite: The two are unrelated. Your son is fine.
When I received my autoimmune diagnosis of a rare disorder called Undifferentiated Connective Tissue Disease, I asked the question again—is our son in danger? My rheumatologist assured me there was no direct connection. Our son was (and is) healthy.
Ryan learned to be careful of my “boo-boo leg.” He knew it was more sensitive and more easily hurt. A slight bump felt like an intense hit. Ryan learned that kicking a soccer ball wasn’t easy for me and that medicine bottles on the counter were to help my leg feel better.
Once when Ryan was in kindergarten, he fell during his lunch play time. He came home with two large band-aids covering his knees. He had worn shorts that day, and his uncovered knees bled when he fell and hit the asphalt. That night, as we got ready for bed, he asked me if he now had boo-boo legs like me.
I held back tears. How was I to explain what I didn’t myself understand, what the doctors didn’t understand?
“Ryan, see how your knees have scabs now?” I asked as I gently touched around his bandages. He looked down at his legs.
“Those scabs mean your body is already healing itself. Your legs are already getting better and will soon be back to regular. Your boo-boos won’t last.”
I kissed his knees and continued. “My boo-boo is inside of my legs. You can’t see it. No one knows why I have it, and no one knows how to make it go away.”
Ryan understands I have an invisible illness. He knows we occasionally park and use my blue sign because walking is sometimes hard for me.
I make an effort to point out others with invisible diseases: famous people he recognizes like
Selena Gomez, the actress who played Beezus in the film Ramona and Beezus, and tennis superstar Venus Williams. Both women live with autoimmune diseases too—Lupus and Sjögren’s syndrome, respectively.
But, I’m not sure how much of my pain and fatigue I should allow Ryan to see. I want him to feel safe. I want him to know that even though I’m hurting, I can and will take care of him. That no matter how tired I may feel or how slowly I may walk, in a real emergency, my mama-bear instincts would kick in gear and I would do anything to protect him.
My autoimmune disease somewhat contradicts the lessons I teach Ryan about taking care of himself. He’s learned all the right things to do, and he knows what his body needs to continue growing healthy and strong. He plays outside every day. He drinks milk and lots of water. He eats fruits and vegetables and gets enough sleep each night.
I did those things too, but I still got sick. So I have to teach my son another lesson: sometimes no matter what you do, bad things happen, and you don’t know why. Sometimes, life doesn’t work out exactly the way you thought it would. Sometimes, life changes in multiple ways, and a lot of it is beyond your control.
I continue teaching my son, like I taught him to tie his shoes and write in cursive. I show him. I let my life serve as an example. Yes, my life has changed a lot. No, I am not as healthy as I thought I would be in my early 40s. But I have learned to change and adapt with my situation.
I no longer teach elementary school and instead am a writer. I no longer walk to the museum in our neighborhood, we drive there. Because no matter what, you don’t give up; you keep going in whatever shape or form that now takes.
How do I explain my autoimmune disease to my son?
I remind him that I have a doctor’s appointment right after I drop him off at school. I tell him I need a quick break in our game of Monopoly so I can take my pill before dinner. I ask him for a pillow so I can prop up my leg. I tell him that yes, I was crying because my legs hurt, because it feels like my legs hurt all the time, and I’m tired of them hurting.
I tell him he can always ask me anything, and I’ll always do my best to answer him.
Wendy Kennar is a mother, former elementary school teacher, and writer. Her work has appeared in a number of publications and anthologies, both in print and online. You can read more from Wendy at www.wendykennar.com where she writes about books, boys, and bodies (living with an invisible disability).