Dr. Stephanie Mihalas - Find Your Balance, Find Your Center

Episode 55 May 18, 2022 00:41:09
Dr. Stephanie Mihalas - Find Your Balance, Find Your Center
Energy in Action by MitoAction
Dr. Stephanie Mihalas - Find Your Balance, Find Your Center

May 18 2022 | 00:41:09

/

Show Notes

 

PARENTS AS RARE - EPISODE 055

Dr. Stephanie Mihalas - Find Your Balance, Find Your Center

 

Dr. Stephanie Mihalas is a licensed psychologist, nationally certified school psychologist and a mental health and chronic illness advocate. She's also a rare disease mom and she has a lot of valuable insight to share with parents.

 

EPISODE HIGHLIGHTS

 

Can you introduce yourself and tell us where your rare disease journey began?

I'm a psychologist and mental health and chronic advocate in Los Angeles, California. I'm also a wife and parent to a daughter in kindergarten. I've had chronic illness since I was 16 years old, but my rare disease journey began about a year after having my daughter. 

 

How do you navigate rare disease with your husband and daughter?

With my training as a child psychologist, this weighs on me a lot. I know the things that create a space for a developing child and I feel like I'm failing or can't give my daughter the perfect space. We try to have transparency to the best of our ability that is appropriate for her. She knows I have an illness, she she's my injections, sees my medications and she knows what's going on. We have appropriate discussions so that when things change, I'm able to reference it so she doesn't internalize that she has done something wrong, as kids often do at her age, and help her to deal with frustration, sadness and feelings in an open way.

 

How can you talk to kids in a developmentally appropriate way about rare disease or chronic illness?

It's important to have a continuing dialogue, even as kids get older, and never to take for granted that a child through different stages needs conversations around the illness or disease. Children, teens and young adults carry an immense weight when a parent has a chronic illness or rare disease and it's important for a parent to take responsibility and check in with them periodically. With younger kids, language can be difficult, so incorporating movement during a conversation can be helpful. You can throw a ball, take a walk or do art. If a child doesn't want to talk, don't push it. Also make available someone for a child to talk to that isn't you, like a therapist, another family member or clergy.

 

CONNECT WITH STEPHANIE

The Center for Well Being

https://askdrstephanie.com/

Twitter @askdrstephanie

https://twitter.com/askdrstephanie

 

FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad

https://twitter.com/rarediseasedad 

Instagram @RareDiseaseDad 

https://www.instagram.com/rarediseasedad/

LinkedIn

https://www.linkedin.com/in/adam-johnson-8a1473125

 

CONNECT WITH MITOACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction



Other Episodes

Episode 67

October 12, 2022 00:30:17
Episode Cover

What Is It Like Being a Research Patient with UDN - Ted Will Tell You

ENERGY IN ACTION - EPISODE 067 What's It Like Being a Research Patient with UDN - Ted Will Tell You   In addition to being...

Listen

Episode 97

October 11, 2023 00:33:09
Episode Cover

Champs Foundation

ENERGY IN ACTION - EPISODE 097 Champs Foundation   Elizabeth Reynolds is a mom of three children and her oldest, William, has Pearson syndrome, a...

Listen

Episode 77

March 15, 2023 00:48:49
Episode Cover

Rare Revolution

PARENTS AS RARE - EPISODE 077 A Rare Revolution - HITMC Meets Rare Disease with Grace Vinton, Kristy Dickinson, & Effie Parks   Grace Vinton,...

Listen