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Parenthood and Online Advocacy: Heather Foisy

Meet Heather: Building A Family and A Sjögren's Community

After eight years of struggling with symptoms – including gastrointestinal issues, food sensitivities, and joint pain – Heather Foisy was diagnosed with Sjögren's at the age of twenty-eight. Doctors told her that she could still have children if she wanted to, but that a pregnancy with Sjögren's would put the baby at increased risk for certain conditions, including congenital heart block.  

“My husband and I really wanted to start a family, so we chose to move forward,” she said. “And we were lucky to get through a pregnancy with little to no complications, my son was born healthy, and now he’s nine years old and absolutely amazing.”  

Shortly after the birth of her son – and after making some lifestyle adjustments – Heather returned to full-time work with her Sjögren's under control. She took a full twelve months of maternity leave and, for that period of time, life was good. However, this soon changed.

“When we decided to try for a second child, I ended up having a miscarriage and my body’s immune system went into overdrive. That was the catalyst for a health crisis that I am still dealing with today,” she said. “I didn’t handle the miscarriage very well. I was in a mental health crisis for about a year, dealing with PTSD and dissociation.”  

Heather managed to find a good therapist, a depression medication that works for her, and focus on healing from this mental health crisis. All of this took about twelve more months, time where caring for her Sjögren's was put on the back burner.  

“That year of disassociation caused me to not be able to feel the devastating impacts of what my immune system was doing to my body,” she said. “I saw my rheumatologist where we talked about my symptoms and did bloodwork. This is when I was also diagnosed with systemic lupus erythematosus.”  

Even with this new diagnosis, Heather continued to deteriorate for nearly six months before finding the right medications to help address her new needs.  

“At the time, I had become bed bound. I couldn’t even chew my food, and I could barely lift a fork to my mouth. It was really quite devastating because my son was four years old at the time and that is a very energetic age,” she said. “One of the things my husband and I struggled with was trying to communicate why I was sick to my four year old child. He didn’t understand that Sjögren's is an invisible disease for so many, so he couldn’t ‘see’ the ouchies or give me a Band-Aid.”  

The heartbreak that resulted from these ongoing misunderstandings led Heather to write a children’s book titled I’m The Biggest Helper With Momma’s Autoimmune Disease.  

“The book is a tool that I built in my greatest time of need for my family, and it’s ultimately what helped my kid understand what my illness is,” she said. “It taught him that you can’t always see when somebody’s in pain, and it allowed me to show these age appropriate tasks, to share how helpful and compassionate he’s been, and to really speak from my soul to his.”  

This book helped to kickstart Heather’s advocacy journey. She originally sold copies of the book for charity, but once she started to share about the book – and her conditions – online, she found a significant Sjögren's community on TikTok. She now approaches her online advocacy with the same generosity she experienced from Sjögren's support groups.  

“My entire life changed the first time I went to an in person support group meeting with the Sjögren's Society of Canada. It was me and five other ladies. We shared our experiences, our feelings about our doctors, but then one person pulled a lip balm out of their purse and said it was magic,” she said. “So we all got our phones out and took a picture, then the next person recommended a new type of eye drop. This is where I learned that I needed to be using preservative free eyedrops, that that’s why my eyedrops were burning. That’s a core memory for me now: I want to help others feel less alone and more supported, the same feeling that those ladies gave to me.”  

Heather’s continued to expand her online reach, launching "The Sjögren's Roadmap" to continue providing resources to people on their chronic illness journeys, wherever they’re at.  

“I started by developing resources that I was needing, like a one page worksheet to help me prepare for my rheumatologist appointments,” she said. “I created worksheets for a medical binder, too, because people with complex health needs, we need to be our own advocates. This means we, unfortunately, need to organize our own health binders and navigate all of that.”  

In addition to providing first hand experiential knowledge to other people living with Sjögren's, Heather is working to teach people without chronic illnesses how to better support others.

“The best thing you can do to support a person with complex health conditions is to listen. Let them talk about it, really try to be an active listener, and seek to understand,” she said. “Don’t minimize the pain they’re in, and understand that so many diseases are invisible. Just because someone has a smile on their face doesn’t mean they’re not in pain.”  

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