Is This Really My Life? Parenting Through the Unexpected – Navigating the Emotional Rollercoaster of a Rare Disease Diagnosis

I remember that day only in fragments. The weather was bright and sunny, and the examination room felt too warm. The doctor entered and sat on the exam table to talk to us, which struck me as unusual. My mind wandered—does he do this with all his patients, or only when delivering life-changing news? My heart pounded so loudly I could barely hear him as he spoke.

“Her immune system is attacking her body… you’ll be seeing lots of different specialists over the next ten-plus years… life-threatening if not controlled.”

When it was time for questions, I pulled out my notebook. I had written them down, fearing I’d forget. But the answers were hard to hear.

“Will she outgrow this?”

“No. We hope she’ll eventually go into remission, but this will be something she lives with for the rest of her life.”

“What will the flares be like?”

“They can mimic different autoimmune diseases. During one flare, her body may attack her joints. Another time, it could be her muscles, nerves, kidneys, heart, or lungs. It’s unpredictable.”

“How is it treated?”

“Oral steroids to quickly suppress her immune system in conjunction with immunosuppressants, with regular bloodwork to monitor her immune function. There will be trial and error while we find the right combinations of medications for her.”

Nothing prepares you for this moment—the moment your child receives a life-changing diagnosis. The fear, grief, confusion, and guilt can feel overwhelming. You might find yourself wondering how to cope, how to support your child, and how to create a sense of normalcy in a life that feels anything but normal.

I’ve been there. I know how isolating and challenging it can be. Over time, I learned strategies that helped my family navigate this rollercoaster, and I want to share them with you.

The Emotional Impact of a Rare Disease Diagnosis

When your child is? diagnosed with a rare disease, it’s not just their world that changes, but yours too, and that of the entire family.?

·????? Shock and Denial: Many parents struggle to process the diagnosis at first, hoping it’s a mistake or that things will quickly improve.

·????? Grief for the Life You Imagined: It’s common to mourn the loss of the “normal” milestones and experiences you anticipated for your child.

·????? Guilt and Blame: Parents often blame themselves or wonder what they could have done differently, even when the diagnosis is beyond their control.

·????? Chronic Stress: The ongoing demands of medical care and the uncertainty about the future can leave parents feeling emotionally and physically drained.

·????? Shame:? Parents also feel a sense of shame about their child’s diagnosis which stems from the guilt that they feel.? ??

I experienced all these emotions. I questioned my parenting choices, blamed myself, and isolated from the support I desperately needed. These feelings are natural and valid—but they don’t have to consume you.

Challenges Parents Face

Beyond the emotional toll, rare disease parenting comes with unique challenges:

·????? Navigating the Medical System: From finding the right specialists to advocating for your child’s needs, the healthcare system can be overwhelming.

·????? Isolation: Friends and family may not fully understand your experience, leaving you feeling alone.

·????? Balancing Responsibilities: Managing your child’s care, work, and relationships can feel like a juggling act with too many balls in the air.

·????? Supporting Siblings: Ensuring siblings feel seen and supported while focusing on your child with a diagnosis adds another layer of complexity. You may find yourself asking questions like, 'Am I doing enough? Am I doing too much? Is my other child okay?'

I remember feeling ill-equipped to handle these challenges.? I scoured the internet for resources and strategies but sadly found only a few.? Eventually, I leaned into my training and expertise as a child and family therapist, applying clinical tools to help myself and my family navigate these uncharted waters.?

Strategies That Helped My Family Navigate the Unimaginable

·????? Give Yourself Permission to Feel:? I knew through my training as a psychotherapist that suppressing emotions can lead to burnout. It became a practice in our family to talk about feelings….alot. The message was that it’s okay to feel overwhelmed, sad, or even angry. ?Any and all feelings were welcome in our family and we practiced safe ways to express them such as through journaling, talking to a trusted friend, or working with a therapist.

·????? Seek Support Early:? As a parent, I learned to connect with other parents through support groups or online communities. Finding others who “get it” reduced feelings of isolation and provided valuable insights.?

·????? Focus on What You Can Control:? When faced with uncertainty, we focused as a family on ‘Controlling the controllables’ – redirecting our energy toward areas we can influence. This included organizing medical appointments, creating a care plan, or creating routines that established predictability for our family.

·????? Prioritize Self-Care:? It took some time, but I learned that caring for myself is essential, not selfish. Whether it’s a five-minute mindfulness practice, a short walk, or asking for help with chores, small acts of self-care can make a big difference in energy and outlook.

·????? Celebrate Small Wins: Focusing on progress, not perfection, helped shift our family's mindset from one of lack to one of abundance. Celebrating progress, no matter how small, helped sustain us through difficult times.

Parenting a child with a rare and/or chronic illness is one of the hardest journeys you’ll face. It challenges your strength, patience, and capacity for love. But it also shows you how resilient you and your family can be.

By acknowledging your feelings, seeking support, and taking intentional steps, you can create a new normal for your family—one filled with connection, hope, and joy.

You don’t have to navigate this journey alone. At Resilient Parent Consulting, I help parents like you reduce stress, find calm, and reconnect with their family.

Start your journey today by downloading my free Resilient Parent Toolkit, a resource designed to provide practical tools and strategies to help your family thrive.

?? Click here to get your free toolkit and learn more about my services.

You’re not just surviving—you’re building a life where your family can truly thrive.