Parenting While Undiagnosed

For a long time, I lived in survival mode without even realizing it. I had been diagnosed with Lupus as a teenager, but over the last year, new symptoms popped up, fatigue that felt heavier than before, shortness of breath from everyday tasks, and dizziness I couldn’t explain. Still, I kept going. Because I had to.

Before I knew what was wrong, I blamed myself.

• I thought I was just out of shape.

• I felt guilty for needing more breaks than other parents.

• I dismissed the signs because who has time to fall apart when you’re raising a child?

It wasn’t until I passed out at home in 2025 that things started to unravel, and finally, come together. I was diagnosed with Pulmonary Arterial Hypertension (PAH), and told my symptoms were part of a broader condition: Mixed Connective Tissue Disease (MCTD), not just Lupus.

Getting the right diagnosis changed everything. Not because it fixed my health overnight, but because it allowed me to stop pretending I was fine.

3 Things I’ve Learned as a Chronically Ill Parent

Chronic illness doesn't pause for parenting, and parenting doesn't pause for chronic illness. Here's what I’ve learned navigating both at once:

1. My energy changes day to day — and I’ve had to parent through all of it.

Some days, I have the energy to do all of the things. Other days, it takes everything I have just to make it through bedtime. For a long time, I was hard on myself on the low-energy days, like I wasn’t doing enough, like I was letting everyone down. But I’ve learned to stop measuring my worth as a parent by what I do and start honoring how I show up.

2. Rest is not a reward. It’s required.

Rest used to feel like something I had to earn. Now it’s something I plan for, prioritize, and protect. Sometimes that means saying no to things other moms can say yes to, but that’s okay. My energy is precious.

3. Kids notice care, not perfection.

My kids know I take medicine every day. They know I might need to sit down and take a break during long outings. They don’t question it; they just move with it. What I’ve learned is that children don’t need you to be invincible; they just need to feel safe, loved, and understood. The way I care for myself in front of them is part of how I care for them, too.

For Parents Still Waiting on a Diagnosis

Living with symptoms but without answers can feel isolating and frustrating, especially when you’re trying to parent through it. Did you know that the average time between symptom onset and detection of PH is over 2 years?

If you’re still navigating the uncertainty of an undiagnosed or misdiagnosed illness, here are a few things that helped me keep going:

• Track what you’re experiencing. Keep notes on your symptoms, patterns, and triggers. This helps you communicate clearly with doctors and advocate for yourself.

  • What changes or flare-ups have you noticed recently?
    
    

• Build a support network. Whether online groups, friends, family, or platforms like CMI, find people who understand or want to understand your experience.

  • Who can you reach out to today for emotional or practical support?

  
  

• Celebrate your parenting wins — big or small. Even on the toughest days, you’re showing up. Sometimes, survival is the biggest success.

  • What’s one thing you did recently that made you proud?

Remember: Your parenting journey is valid — diagnosis or not.