Body

Published on November 9th, 2015 | by Wendy Kennar

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The “A” Word: WENDY KENNAR on Parenting with an Invisible Disability

It’s not the “c” word.

It’s the “a” word.  But not that “a word.”

Although it does feel like a kick in the a– –.  And it certainly is a pain in the a– –.

There’s no ribbon for it.  No periodic mailers full of address labels while requesting a monetary donation in exchange.  No annual city-wide walk to raise funds.

I have an autoimmune disease.  And truthfully, “autoimmune” isn’t even a word I was familiar with until about four years ago.  When I was told I had one.

Here’s the deal with my autoimmune disease (mine because different people have different situations and different symptoms); it’s somewhat invisible.  I don’t have any outward sign that something is wrong.  No walker or wheelchair that would provide those around me with a visible cue that I will be moving slower than they are.  I don’t wear a cast or a brace.  I don’t receive regular treatments.  I don’t get “better.”  Or at least, long-term, it’s-all-gone-better.

I’ve been diagnosed with Undifferentiated Connective Tissue Disease (UCTD).  At the time, my rheumatologist told me it was so uncommon that if I wanted to walk around and call it the “Kennar,” I could.  He described my particular condition as having over-lapping symptoms of lupus, rheumatoid arthritis, and myositis although I don’t (at this time) have any of those three conditions.  This overlap made my illness difficult to diagnosis and difficult to treat.

I once confided to a physical therapist that when the pain was really bad, I didn’t get down on the floor and do my prescribed stretches.  I couldn’t.  If I got down, I may not be able to get back up.  He told me he understood, and all he asked was that I just never stopped.  I had to do something each day.  “Just don’t give in to the pain and discomfort, and stay in bed all day,” he said.

I told him he didn’t need to worry.  I have a young son at home.  There’s no chance of that happening.

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And honestly, my son is another complication in this situation. It’s because of my son that I don’t rest like I should, that I do push myself too hard, and do things that I know I shouldn’t. Or that I feel I should be able to, but I shouldn’t. I can’t say no when my son asks to sit on my lap, play basketball with me, or go to the nearby playground so he can play on the swings. It’s not his fault that I hurt. And he’s really not asking for anything out of the ordinary. All his requests are for things I used to be able to do quite easily. And I want to still be able to do them.

The way I figure it, I’ve got a very small window of opportunity when my seven-year-old son will allow me to do those things.  I’ve got to take advantage of it while I can.  I want to be hands-on, I want to be involved. Pain isn’t going to stop me from being the kind of Mommy I want to be.

My son doesn’t understand what’s wrong with me (and, honestly, I don’t know if I do either.)  He’s fallen and gotten scrapes and cuts on his knees and wondered aloud if he’d have to use a wheelchair at the zoo or see the doctor more than once a year.  It’s skewing his sense of the outcomes of a “boo boo.” And I’ve done my best to explain to him that when his leg hurts, it’s very different from the times my leg hurts.  We’ve described his boo-boos as being hurts on the outside of a leg.  Something he can see, something that will form a scab and heal.  And I’ve told him that my boo-boos are inside my leg.  We can’t see them, and we don’t always know when they’re going to hurt.

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Sometimes my son will start asking questions that make me want to cry.

 

“How did you get your boo-boo leg?” 

“Doctors don’t really know.”

 “When will it go away?”  

“I don’t know.  All I can do is try my best each day.”

 

I am stuck in the impossible position of wanting to ignore my chronic medical condition and knowing that it’s unrealistic to do so.  It is a huge part of who I am—as a woman, a wife, and a mother.

Because I suffer from an “invisible disability” most people don’t know there is anything “wrong” with me.  I take my son to and from school each day.  I volunteer in my son’s first grade classroom each week.  Observers might even say I’m lazy.  After all, I drive my son a short distance that is entirely walkable.  I sometimes sit on our front step instead of joining in the ball game my son and husband are playing.  When I sit in my son’s classroom, I bite my tongue to stop myself from taking it over—they don’t know that I left my own twelve-year teaching career at the direction of my doctor. .

On my good days, my pain is just a part of everything I do.  It doesn’t stop me from grocery shopping, from weekly trips to the public library, from playing “squish” with my son on my bed.  On my bad days, my pain is a giant red flag.  Tears, ice packs, medication.

“Retirement due to a disability” —that’s the official reason why I left teaching.  And it has caused me to re-think what it means to be disabled.  It used to be much more clear-cut.  My maternal grandmother, a woman who suffered from strokes, breast cancer, and rheumatoid arthritis, was dependent on a wheelchair.  For most of my life, she was the face of someone who was disabled.  Now, I’ve learned there are degrees of disability.  And those degrees include me.

My husband is African-American.  But I don’t look at Paul and see a black man.  I see my man, my husband, who happens to be black .  His skin color is just a detail. Likewise, I don’t look at Ryan and see a biracial son.  I see my son.  A healthy, handsome, happy boy.  And I don’t want my guys to look at me and see a disabled mommy.  I’d like my medical limitations to be in the background, but more and more I’m realizing that I can’t treat this chronic condition as a cursory detail; it’s primary in our family dynamic.

At times it breaks my heart that my son doesn’t remember me “before.”  He has no memory that he and I used to go for hour-long walks in our neighborhood and observe the birds, bees, and butterflies we’d see.  He doesn’t remember that I used to be able to dance a lot longer before getting tired.  He doesn’t remember that there wasn’t always a line up of pill bottles on our kitchen counter.

It’s easy to play the guilt game.  Everything we do now has to be thought of as “What can Mommy safely do?”  A trip to Disneyland, a visit to the San Diego Zoo Safari Park, a tour of the Hearst Castle.  Is it physically possible?  How much pain will I be in afterwards?  (And there’s no way of knowing in advance.  All I can do is count on some level of pain).

On the other hand, I’m hopeful that because my son is growing up with a mother with physical limitations, that he will grow up to be even more compassionate and patient with others, that as he gets older he’ll realize that people are dealing with issues that are not always evident on the outside.  That people have different limitations, and we need to respect them.

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Arturo de Albornoz / flickr copyright commons

When I was still teaching, I was once brought to tears, when a parent of one of my former students chastised me for not going up the stairs faster.  “You can do better than that.”  Well, no really, I couldn’t.  Just climbing the stairs was an accomplishment.

I want my son to try as hard as he can. I want my son to see that it’s okay to ask for help and that strength takes different forms.

When I used to teach kindergarten, a common refrain was, “You get what you get.” It was my reply to a student who wanted a red pencil instead of a blue pencil or a child who wanted the green cup instead of the yellow cup.  Many of my students added, “And you don’t get upset.”  I always disagreed with that part.  You can get upset.

I am upset. I’m young still, and I’m in pain all the time. It was unexpected.  It’s unfair.  It makes me unhappy.

But I can’t stay there.  I have to focus on another “u” word—understand.  Understand that most people are walking around hurt in some shape or form.  Understand that no one knows why somethings happen.  Understand that I am a good mother.

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Feature photo “painty legs” by Nicki Varkevisser / flickr creative commons

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About the Author

Wendy Kennar

Wendy Kennar is a freelance writer who finds inspiration in her seven-year-old son as well as from her experiences from her twelve-year teaching career.  Her writing has appeared in several publications and anthologies including: the Los Angeles Times, Christian Science Monitor, United Teacher, RoleReboot.org, Mamalode.com, MomsLA.com, Lessons From My Parents, and Sisters Born, Sisters Found, among others. She blogs at http://wendykennar.blogspot.com/.



10 Responses to The “A” Word: WENDY KENNAR on Parenting with an Invisible Disability

  1. JodyL says:

    You are, indeed, a very good mother, and I totally understand. I have a rare genetic connective tissue disorder (Ehlers-Danlos [hypermobility]), and I can almost tearfully connect with this piece. The chronic symptoms at times overwhelm me. Aging has secretly given me an acceptable visible excuse for my side effects!

  2. angela says:

    You hit the nail on the head. I have myositis which is very similar to UCTD, as you know. My daughter is 3 years old. Thank you for this article. Love it.

  3. Sandra Frost says:

    Thank you! I, too, have been diagnosed with UCTD and it seems that this is the least-known, least understood AI disorders. Lupus, RA, Scleroderma…many AI disorders are more mainstream and seem to have a more familiar nod from the outside world. Not so with UCTD. I appreciate your blog and the wonderful way you expressed the effects this disease has had on you, on your career and lifestyle, and on your family. Many blessings to you as we fight through this thing, all together.

    • Wendy Wendy says:

      Sandra, thank you for reaching out. It’s a tremendous help knowing we’re not alone, that someone else “gets it.” Wishing you the best, Wendy

  4. Dana Shaw says:

    I to have UCTD. There are days that i to struggle
    To get through the say. But i don’t have small
    Children at home. So i can rest whe i want to.
    I do also have fibro. That is just a few medical
    Problems that i have. I pray that thing go better
    For you.

  5. Tammy Polozune says:

    Thank you. I wish there was more info out there for those of us with this condition. And whether it is progressive or not. If it helps you at all, I raised two sons while living with this condition. They survived and I’m still here. They and their dad do tend to take care of me now.

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