Confessions of a Rare Disease Mama

The Gap in Mental Health Support After a Diagnosis

• Jillian Arnold • Episode 67

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0:00 | 31:17

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When your child receives a life-altering diagnosis, you leave the hospital with a care plan.

...But no one gives you a coping plan.

In this episode, I’m talking about the part no one prepares you for: the emotional aftermath of becoming a medical parent overnight. The grief, the anxiety, the constant fear… and the expectation that you’ll somehow carry it all while staying strong for your child.

We talk so much about treatments, therapies, and survival, but almost nothing about what it takes to survive this emotionally. And unfortunately there is a HUGE gap in the medical system and mental health support for caregivers. 

If you’ve ever felt overwhelmed, isolated, or like you were quietly falling apart while caring for your child… this episode is for you.

You are not alone in this.

💬 In This Episode, We Talk About:

  •  What the early days after diagnosis really feel like 
  •  The gap in mental health support for medical parents 
  •  The emotional weight of caregiving 
  •  The pressure to “hold it all together” 
  •  Why so many parents feel unseen and unsupported 
  •  What it means to need a coping plan, not just a care plan

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Jillian Arnold

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