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Confessions of a Rare Disease MamaAuthor: Jillian Arnold
Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent. Language: en-us Genres: Health & Fitness, Kids & Family, Medicine, Parenting Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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The Mental Load No One Sees
Episode 69
Tuesday, 29 September, 2026
Send us Fan MailThere’s the physical work of caregiving… and then there’s everything happening inside your head.In this episode, I’m talking about the invisible mental load that comes with being the primary caregiver to two medically complex children — remembering medications and doses, tracking symptoms, scheduling appointments, coordinating specialists, managing nursing, ordering supplies, dealing with insurance and Medicaid, communicating with school and therapists, keeping up with equipment, feeds, bowel movements, seizures, respiratory symptoms… and constantly thinking about what needs to happen next.Because even when someone else is physically caring for my kids, I’m often still the person carrying the information.This isn’t an episode about blaming spouses or keeping score. It’s about something I think a lot of primary caregivers experience: over time, one person often becomes the keeper of the information simply because they’re the one coordinating so many pieces of care.And that means getting help doesn’t always mean your brain gets to shut off.We’re talking about the difference between the physical workload and the mental load, why delegating can sometimes become another task in itself, what it feels like to be perpetually “on call,” and why caregiving can be exhausting even on days when you technically had help.If you’ve ever thought, “I’m not even doing anything right now, so why do I still feel completely overwhelmed?” — this episode is for you.Resources & Links for this episode:Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift ShopLearn more about our brave warriors: saveromanandstella.comSupport our family: GoFundMeFollow us! Instagram: @confessionsofararediseasemamaTikTok: @rare_mamaFacebook: Jillian Arnold & Confessions of a Rare Disease MamaGet your FREE Positive Affirmations for the Medical Parent PDF here!Shop our ...
