Pompe disease hasn’t changed my desire to have a friend and be a friend

When my daughter Caroline was diagnosed with Pompe disease, I knew life would look different. I figured our routines would change, our priorities would shift, and our days would suddenly be filled with appointments, infusions, and medical conversations I never imagined I’d have.

What I didn’t expect was how much some of my relationships would change.

Almost overnight, some friends and family started treating me more gently. Conversations changed. People stopped sharing the usual frustrations — work stress, marriage disagreements, parenting struggles, or feeling overwhelmed by the day-to-day.

At first, I didn’t really notice. But as time went on, I realized people were starting to filter themselves around me.

Some worried their problems would seem small compared with what our family was facing. Others didn’t want to add more to my plate or overwhelm me. I know it all came from a place of love, and I really did appreciate how much people wanted to protect me. But, honestly, I missed hearing about their lives. I missed the normalcy of those conversations. I missed hearing my friends complain about things that might seem small next to rare disease life. I missed the back-and-forth, the mutual support that real friendships are built on.

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We all have challenges

Here’s something I’ve learned since Caroline’s diagnosis: Hardship isn’t a competition.

Just because someone else is carrying something heavier doesn’t make your pain any less real. Stress doesn’t go away just because another family is facing a medical crisis. We’re all carrying something. We all have challenges that feel heavy in our own lives, and those struggles deserve space and care, too.

Sometimes, hearing about other people’s lives was exactly what I needed.

Rare disease life can take over everything if you let it. The appointments, the research, the scheduling, the worrying — it can fill up every corner of your mind. Listening to a friend talk about work drama, school pickup chaos, or an argument with their spouse gave my brain a break. It reminded me there was still a world outside of hospitals and diagnoses. It gave me the gift of feeling normal again.

And honestly, I needed that more than most people realized.

There’s something deeply comforting about being vulnerable together. I needed to vent to my friends just as much as I needed them to vent to me. Real friendship isn’t just one person always being the strong one while everyone else tiptoes around them. Sometimes, the most healing thing a friend can do is just keep showing up as themselves.

Not every conversation had to be about Pompe disease. Not every interaction needed to carry the weight of what we were going through. Sometimes I just wanted to laugh about something ridiculous, listen to someone complain about their boss, or hear about a minor inconvenience that felt huge in their world that day.

That didn’t make what our family was facing any smaller. If anything, it helped me carry it.

I think when someone goes through something hard, whether it’s illness, grief, or trauma, people get scared of saying the wrong thing. They worry their own problems will sound trivial or selfish. But I wish more people knew that connection doesn’t come from perfectly measured conversations. It comes from honesty.

The people who helped me most weren’t always the ones with the perfect comforting words. Most of the time, they were just the ones who kept letting me be part of real, everyday life.

Pompe disease changed so much for our family. But it didn’t change my desire to be a friend, to listen, to laugh, to vent, and to stay close to the people I love. If anything, it made those relationships matter even more.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.