Parenting While Living With a Chronic Illness: Finding Strength When Your Children Need You

“Mommy, are you going to die?”

That was the question my then-five-year-old daughter, Stephanie, asked me one day as I was struggling to understand what was happening to my body.

At the time, I was a single, full-time working mother raising a young daughter who was the center of my world. I had gone from being a vibrant, active and engaged parent to someone who could no longer control her bladder, was overwhelmed by debilitating fatigue and, some days, couldn’t make it out of bed.

Eventually, I would be diagnosed with multiple sclerosis (MS). But while I was fighting for answers and trying to understand what was happening to me, there was something else I didn’t fully realize - my daughter was struggling, too.

She was afraid she was going to lose her mother.

Living with a chronic illness can bring a flood of emotions – not only for the person who is sick, but for the entire family. And when you’re a parent, illness can challenge your vision of the kind of parent you thought you would be. That, in of itself, feels like a tremendous loss.

While I learned that a my MS didn't mean I couldn't be the mother my daughter needed, I realized that I had I to rethink what being that mother looked like for me.

Focus on What You Can Do, Not What You Can’t

Most of us have a vision of the kind of parent we want to be. A chronic illness diagnosis can suddenly make some of those plans feel impossible. But different doesn't mean less meaningful.

When my daughter’s school announced an upcoming field trip, I was excited to volunteer as a chaperone. Then her teacher called and told me it would be “unsafe” for me to go.

I was furious.

But after my anger subsided, I had to acknowledge a difficult truth. At that point, I was using a wheelchair. If a young child suddenly ran away from the group, I wouldn't be able to chase after them. The teacher wasn't telling me I couldn't contribute. She was telling me that particular role wasn't right for me.

So, I started thinking about what I could do.

I called her back and proposed something different. I would come to the classroom and read to the students as often as I could.

What I didn’t realize was that it would become an incredible experience for me, my daughter, and her classmates. Stephanie was accustomed to seeing me in a wheelchair, but many of the other children weren't. Before long, the wheelchair wasn't the focus. I was simply Stephanie's mom who came to read to them.

It became an important lesson for me, too. I couldn't always parent exactly the way I had imagined. But I could pivot, adapt, and find new ways to show up.

For parents living with chronic illness, that may mean letting go of what you think you should be able to do and focusing instead on the moments and experiences you can create with your children. Beautiful things can come out it – even more beautiful and rewarding than you could have ever imagined.

Talk With Your Children About Your Illness

Talking with children about illness can be incredibly difficult. We naturally want to protect them from frightening information.

But children often understand far more than we realize – even when they aren't talking about it.

A few years ago, my daughter told me that as a child, she lived with a constant fear that she could lose me at any time. I had no idea.

While I was grieving the life I thought I was going to have, my young daughter was dealing with fears of her own. From the outside, she appeared to be doing well. She did well in school, her behavior didn't raise concerns, and she seemed to roll with the punches.

But beneath the surface, she was trying to make sense of what my illness meant for her and whether her mom was going to be okay.

That's why age-appropriate, honest conversations can be so important.

What you tell your children will depend on many factors, including their age and maturity, your diagnosis and prognosis, the symptoms they may see, and how your illness may affect everyday family life.

You don't need to have every answer. In fact, sometimes the most honest answer is, “I don't know yet.” But giving children an opportunity to ask questions – and letting them know that their fears, sadness, anger, or confusion are safe to talk about – can help prevent them from being left to fill in the blanks themselves.

There are excellent resources available to help parents navigate these difficult conversations, including:

• Nemours KidsHealth: Telling Your Child a Family Member Has a Serious Illness

• Harvard Health: How to Talk to Children About the Serious Illness of a Loved One

• Cleveland Clinic: Talking to Kids About a Loved One’s Serious Illness

Give Yourself Permission to Parent Differently

One of the hardest things about parenting with a chronic illness can be comparing the parent you are today with the parent you were before you became sick or with the parents you see around you.

There may be days when your body simply won't cooperate. You may miss a field trip, sporting event, or birthday party. You may need your children to understand that today has to be a quiet day at home.

Those moments can bring guilt. But I've learned that being present in your child's life isn't defined by how many activities you attend or how much physical energy you have.

Sometimes showing up means reading a book together from the couch. Sometimes it means asking someone else for help so your child can have an experience you can't physically provide. And sometimes it simply means listening when your child needs to tell you that having a sick parent is hard.

Chronic illness may change the way you parent. But it can never change how deeply you love your children or how important you are in their lives.

Stephanie is an adult now, and when I look back at those early years of my illness, there are many things I wish I had known.

I wish I had understood sooner that my daughter was experiencing my illness alongside me. I wish I had talked with her more openly about what she was feeling. And I wish I had spent less time focusing on everything my illness had taken away and more time recognizing everything I could still give her.

You may not be able to control what chronic illness changes in your life. But you can continue to show up, adapt and remind your children – through your words and your actions – that illness is only one part of your family's story.