Prime Time or Off-Peak? Life with Chronic Illness at Midlife
A personal essay about invisible disability and aging by Wendy Kennar
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by Wendy Kennar
One night after a particularly tough pain day, I sat on the couch as my husband stood behind me and brushed my hair. I told him I felt like I was slowly falling apart.
“I’m becoming just like one of my Grandma’s purses,” I said.
“What does that mean?” Paul asked with a slight chuckle.
“My grandma never liked to get rid of a purse. She’d tape the handles, because the rest of it was still in good condition. It wasn’t ripped. The zipper worked. Just the handles were breaking. She’d use a taped-up purse. That’s who I’m becoming,” I said.
“No, you’re not,” he said.
It’s how I felt just then, and it’s how I feel a lot of the time. Parts of me work just fine. Other parts, specifically my left leg, are more like the taped up purse handles — kind of working, kind of getting the job done, but definitely not in pristine condition.
I live with an invisible disability, an autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD). Upon giving me my diagnosis, my rheumatologist told me UCTD shared overlapping symptoms of lupus, rheumatoid arthritis, and myositis. He told me UCTD was rare and there wasn’t a lot we could do beyond managing the symptoms. My symptoms were pain, fatigue, and weakness in my left leg.
Our son is baffled when I tell him I can’t always remember my age. Ryan never forgets his age, and carefully keeps track of when he’ll meet the half-year-older mark. Of course, I know I’m in my late forties. But it’s more complicated for me, because I feel so much older.
Sometimes I have to say my age out loud, to remind myself, because it doesn’t quite seem possible. In many ways I feel like the same girl I was when my then-boyfriend, now-husband of more than twenty years first asked if he could kiss me goodnight. I still drink apple juice at breakfast. I still wear fuzzy, colorful socks at bedtime. I still prefer sunflowers to roses and silver to gold. Yet, physically I feel much older than my years, as if I am experiencing part of my aging process on a specially designed fast track.
After all, I retired from my teaching career days before my thirty-seventh birthday. Retirement didn’t happen the way I imagined. It wasn’t the way my dad retired from his thirty-year career with the phone company. His retirement was expected, applauded, and celebrated.
I initially fought my retirement. I tried to ignore the daily tears, the gripping pain in my leg, the sheer exhaustion. I thought I could keep chugging along like the little engine that could. But that wasn’t sustainable. I was disappearing into my teaching obligations, my pain, and my disease.
I’m in my forties, yet when I climb the stairs to our bedroom each night my knees creak as if I’m walking on the hardwood floors in my parents’ nearly-hundred-year-old house. I have a disabled parking placard in the car, something my dad didn’t qualify for until he was seventy-five. Acquaintances may tell me I look fine, but I don’t feel fine. I feel worn-out and weary.
It’s hard to know which parts of my life are impacted by natural aging and which parts have been impacted by my autoimmune disease.
Is my lack of energy and lack of flexibility a result of my body simply not being twenty-one any more? Or have all these changes somehow been sped up, as if I’m rolling along downhill, the brakes have gone out, and not only can’t I stop, I can’t even slow it down?
I don’t know. I’ll never know. Because there’s no way to separate the naturally-aging me from the chronic patient me.
In my low moments, when it hurts to get in and out of the car, I am an old, weak woman trapped in a younger woman’s shell of a body. I walk around in a near constant level of pain and fear. They’re always there, sometimes at a full-on boil like a pot ready for my son’s favorite noodles. Sometimes on a low simmer, like the sauce that gently bubbles on the stove. But always on.
I am terrified of what the next MRI might show, fearful that a shopping trip to Target may leave me in pain for the rest of the day. Because if that happens now, what will happen when I become a senior citizen — the time of my life when my body is expected to slow down, suffer aches and pains, and generally not be as fast or resilient?
As the years go on, multiple body parts and systems have become affected. Autoimmune diseases tend to function like dominoes — starting off with one and then causing multiples to fall. Now I have digestive issues. Now I have my optometrist warning me that one of my medications frequently causes damage to eyes after long-term use. Now I have also been diagnosed with osteoarthritis and Raynaud’s disease.
Whether you have an autoimmune disease or not, no one knows how the future will play out. Things happen in our bodies that can’t always be predicted or explained. But when you live with a chronic illness, the scale seems tipped. Like it’s not a matter of “if” something bad will happen, but “when.”
Other women regard their forties as the prime of their life. Any age-related limitations seem far off in the distant future. I, on the other hand, definitely don’t think my best years are still ahead of me. In fact, I wonder if it’s the opposite.
What if I missed my chance for new experiences? I worry that I was so busy following schedules and checking things off my carefully constructed list of plans, that I missed my chance for big adventures in different cities, different states, different countries. I’m afraid that my physical capabilities will become increasingly limited and soon it will all be downhill from here.
Looking back, I realize I already had my prime. I just didn’t know it then. My best years involve Ryan — 2007, the year I became pregnant with Ryan, and 2008, the year Ryan was born. My body was a wonder, capable of miracles.
Now, it’s a different story. But I have decided I don’t want to be compared to a taped up purse. Instead, I choose to compare myself to one of those time-lapse videos of a stargazer lily blooming. The flower is still striking, the smell still fragrant. But the overall effect is a faster, shorter bloom.
Wendy Kennar is a mother, wife, writer, and former teacher. You can read more from Wendy at her website where she writes about books, boys, and bodies (living with an invisible disability). You can find Wendy on Instagram @wendykennar. Wendy is currently at work on a memoir-in-essays.
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Your honesty and vulnerability are so powerful, Wendy. And eye-opening! Thank you for sharing your words with the world.
Wendy, so much solidarity. Our society doesn't support people who are visibly ill, let alone people (especially women) who suffer with invisible illnesses. So many Americans have invisible illnesses. Thank you for calling attention to this neglected topic.