Finding the silver linings in being a parent with a chronic illness.
Health and wellness touch each of us differently. This is one person’s story.
I’d just settled into a bath, filled with steaming water and six cups of Epsom salts, hoping the combination would allow some of the pain in my joints to ease and calm my spasming muscles.
Then I heard banging in the kitchen. I wanted to cry. What on earth was my child getting into now?
As a single parent with a chronic illness, I was absolutely exhausted. My body ached and my head throbbed.
As I heard drawers open and close in my bedroom I sunk my head into the water, listening to my heartbeat echo in my ears. I reminded myself this was my time to take care of me, and it was vitally important I do so.
It was okay that my my ten-year-old child was alone for those 20 minutes I was soaking in the tub, I told myself. I tried to breathe out some of the guilt I was holding.
Trying to let go of guilt is something I find myself doing quite often as a parent — even more so now that I’m a disabled, chronically ill parent.
I’m definitely not the only one. I’m part of an online support group for parents with chronic illness that’s full of people who question what impact their limitations are having on their children.
We live in a society focused on productivity and a culture that puts such emphasis on all the things we can do for our children. It’s no wonder we question whether or not we’re good enough parents.
There’s a societal pressure for parents to take their tots to “Mommy and Me” gymnastics classes, volunteer in the elementary school classroom, shuttle our teens between multiple clubs and programs, throw Pinterest-perfect birthday parties, and make wholesome well-rounded meals — all while making sure our children don’t have too much screen time.
As I’m sometimes too ill to leave the bed, much less the house, these societal expectations can make me feel like a failure.
However, what I — and countless other parents who are chronically ill — have found is that despite the things we can’t do, there are many values we teach our kids by having a chronic illness.
One of the gifts of chronic illness is the gift of time.
When your body doesn’t have the ability to work full time or engage in the “go-go-go, do-do-do” mentality that’s so common in our society, you’re forced to slow down.
Before I was ill, I worked full time and taught a few nights on top of that, and went to grad school full time as well. We often spent our family time doing things like going for hikes, attending community events, and doing other activities out and about in the world.
When I became ill those things came to a halt rather suddenly, and my children (then ages 8 and 9) and I had to come to terms with a new reality.
While I no longer could do a lot of things my kids were used to us doing together, I also suddenly had a lot more time to spend with them.
Life slows down significantly when you’re ill, and my being sick slowed down life for my children, too.
There are a lot of opportunities for snuggles in bed with a movie or lying on the couch listening to my children read me a book. I’m at home and can be present for them when they want to talk or just need an extra hug.
Life, for both me and my children, has become much more focused on the now and enjoying the simple moments.
When my younger child was 9 years old they told me my next tattoo needed to be the words “take care,” so whenever I saw it I’d remember to take care of myself.
Those words are now inked in sweeping cursive on my right arm, and they were right — it’s a wonderful daily reminder.
Being ill and watching me focus on self-care has helped teach my children the importance of caring for themselves.
My children have learned that sometimes we need to say no to things, or step away from activities in order to go take care of our body’s needs.
They’ve learned the importance of eating regularly and eating foods that our bodies respond well to, as well as the significance of getting plenty of rest.
They know not only is it important to care for others, but it’s equally important to care for ourselves.
The main things my children have learned being raised by a parent with chronic illness are compassion and empathy.
In the chronic illness support groups I’m part of online, this comes up time and time again: the ways our children develop into highly compassionate and caring individuals.
My children understand that sometimes people are in pain, or have difficulty with tasks that may come easy to others. They’re quick to offer help to those they see struggling or just listen to friends who are hurting.
They also show this compassion to me, which makes me deeply proud and grateful.
When I crawled out of that bath, I braced myself to be confronted with a huge mess in the house. I wrapped myself in a towel and took a deep breath in preparation. What I found instead brought me to tears.
My child had laid out my favorite “comfies” on the bed and brewed me a cup of tea. I sat on the end of my bed taking it all in.
The pain was still there, as was the exhaustion. But as my child walked in and gave me a big hug, the guilt wasn’t.
Instead, there was just love for my beautiful family and gratitude for all the things that living in this chronically ill and disabled body is teaching me and those I love.
Angie Ebba is a queer disabled artist who teaches writing workshops and performs nationwide. Angie believes in the power of art, writing, and performance to help us gain a better understanding of ourselves, build community, and make change. You can find Angie on her website, her blog, or Facebook.