133: This Thing They Call Recovery’s Jenny McGibbon on The Nuanced Experience of Living with a Disability

Uninvisible Pod with Lauren Freedman

Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.”

Tune in as Jenny shares:

• how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries
• that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia
• that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment
• how she got an ME/CFS diagnosis
• the symptoms that impact her most acutely — pain and fatigue
• a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing”
• why she owes her life to the NHS
• how and why she started This Thing They Call Recovery
• what disabled identity means to her
• what the community she’s cultivated means to her
• why there doesn’t always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is

This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe