October 20, 2022

The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette

42 minutes

ONCE UPON A GENE - EPISODE 157

Episode 157 - The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette

Michaelle Jinette is a wife and the mom to four boys. Her last son was born with a rare disease and she started a foundation to find and help create a therapy for kids with KCNH1 related disorders. She is also a marriage and family therapist and we're talking with her about the mental aspects of the rare disease world.

EPISODE HIGHLIGHTS

What advice do you have for parents at the beginning of the rare disease journey?

Find a balance of allowing yourself time to process and grieve, but try to move forward and cope in healthy ways. Find what grounds you, stay present, limit negative thoughts of the future and reach out for support from professions, friends and family.

When stuck in the comparison phase, what advice do you have for parents to move beyond that?

Have perspective and be intentional about seeking and having gratitude. Bitterness will isolate you, so choose gratitude and choose to shift your focus to the abilities your child does have, to joy, to your support system, or anything else.

What tips do you have for maintaining a healthy marriage?

Marriage and marriage with young kids is hard to begin with without the added complexity and stress of having kids with extra needs. You have to choose your priorities and set boundaries to focus on them. Carve time out for yourself and your spouse by hiring or asking for help. When you are together, be present and not on your phone or distracted otherwise.

In the way that men and women handle things differently, how can we ensure there's not a resulting resentment?

Very frequently in relationships, there's one partner who is less comfortable with emotional connections and one partner pushing for more emotional connections. With major stressors or grief around diagnosis and health issues, women may feel like men won't talk openly and they feel isolated, when in fact, studies have shown that in conflict or emotional situations, men are dis-regulated. They're overwhelmed, but they cope by avoiding, shutting down and withdrawing. It's important to remember that while your partner may be withdrawn or holding back feelings, that doesn't mean they don't care. Try to have conversations at times when tension isn't high.

LINKS & RESOURCES MENTIONED

Clubhouse Gene Fixers

https://www.clubhouse.com/club/thegenefixers

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By Effie Parks

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