Heather has accumulated an overwhelming number of medical diagnoses, including Sjogren’s disease, vasculitis, SLE lupus, new daily persistent headache disorder, small intestine bacterial overgrowth (SIBO) and endometriosis. At 20 years old her boyfriend (who is now her husband) sat her down to say she was sick and needed to go to the hospital. She had been in pain every day, got sick every time she ate and could barely go to work. This intervention was an awakening that she had been living with a chronic illness, and the beginning of her search for a diagnosis. It would take 8 years to find a doctor willing to listen to her, without dismissing her claims and shooing her out the door. At 28 she was diagnosed with vasculitis and Sjogren’s, and over the next few years her list of diagnoses would expand.
In this episode of the Major Pain podcast Heather talks us through her diagnostic journey, teaches us about her diseases from a first hand perspective, and shares how this adversity inspired her creativity. Heather became determined to create purpose from her suffering and turn her pain into something positive. The result was the self-published children’s book “I’m the Biggest Helper with Momma’s Autoimmune Disease,” based on her experiences parenting while chronically ill. She wrote it because her four year old son was having a hard time understanding why she was always sick, but since releasing the book to a wider audience she has gotten meaningful feedback that it has helped other families as well. Her health has taken a turn for the better since finding proper medication to manage her lupus, a brand new drug called benlysta. Heather was one of the first people in her area to receive this drug, which has significantly improved her quality of life. Although Heather’s chronic illness journey is a constant struggle, it has taught her valuable lessons about listening to her body, perseverance and gratitude.
Find Heather’s book, blog and advocacy at https://www.spoonieselfcare.ca/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/