33: Brave Together Podcast - Jessica Patay, Susanna Peace Lovell and Dr. Zoe Shaw - Episode 3333: Brave Together Podcast - Jessica Patay, Susanna Peace Lovell and Dr. Zoe Shaw - Episode 33
UK Health Radio Podcast
Conversation with rare disease mum and author Nikki McIntosh about advocating for her son with SMA, confronting people‑pleasing, and treating self-care as essential. The episode highlights boundaries, community and finding new purpose in the middle of long-term caregiving.
47:35•16 Sept 2026
Room Mum, Rare Disease and Learning to Say No: Nikki McIntosh on Brave Together
Episode Overview
- Parents are the experts on their children and may need to push hard for tests and referrals if concerns are dismissed.
- People‑pleasing and saying yes to extra roles can come at a high cost to a caregiver’s wellbeing.
- Others often cannot truly grasp a caregiver’s capacity, so carers must define and enforce their own boundaries.
- Self-care can be treated as a non‑negotiable by planning rest and recovery around big appointments and stressful days.
- Using personal experience to support others, through projects like Rare Mamas, can bring meaning and a sense of purpose.
“We have to set our own boundaries around our time and be the ones to enforce them. No one's going to do this for us.”
Get ready to be moved by real-life accounts of caregiving that hit straight to the heart. This UK Health Radio episode shares a Brave Together Podcast story with host Jessica Patay, co-host Susanna Peace Lovell and guest Nikki McIntosh, a rare disease mum, advocate, author and founder of Rare Mamas. Nikki talks about life with her son Miles, who has spinal muscular atrophy (SMA), a rare neuromuscular disease that affects basic functions like walking, eating and breathing.
She recalls pushing past repeated dismissals from professionals until a neurologist finally took her seriously. Her message to parents in that diagnostic maze is crystal clear: "Keep pushing because those answers are going to give you a lot of things that you need." You’ll hear a painfully relatable story about being asked to be “room mum” just after sharing her son’s devastating diagnosis with a teacher.
Nikki admits she said yes out of people-pleasing, then paid for it with exhaustion: "Sacrificing my own care so I could still keep up with all of life's demands… wasn't working well. For anyone." That moment became a turning point in how she sees capacity, boundaries and worth. A big thread through the conversation is self-care as a non‑negotiable rather than a reward.
Nikki explains how she plans recovery time *on purpose* after big appointments and encourages caregivers to be "really strategic and tactical" about protecting their limited energy. She reminds carers that others "really don't understand your capacity", so boundaries must come from you. The episode also touches on her book *Rare Mamas*, how writing became both a resource for other parents and a personal release, and her new intention to "chase peace" in the next season of life.
If you’ve ever said yes when every cell in your body was screaming no, this conversation might be the gentle nudge to rethink what you owe yourself. Where could you start making your own wellbeing a non‑negotiable?
Do you want to link to this podcast?
Get the buttons here!
More From This Show
The latest episodes from the same podcast.