Rewriting History: My Autoimmune Journey

Margaret Floyd Barry

July 20, 2021

My autoimmune journey started long before my own personal diagnosis. It began when I was a little girl, with my mom. 

My mom was an incredibly powerful woman: a professional concert pianist and renowned professor of piano pedagogy. She was often on the road touring, coaching her students (several of them now among the “A-listers” of the classical piano world), a true leader in her field. And yet her career – while filled with potential and many successes – was stunted by a variety of mysterious health issues that would ultimately take her out.

For as long as I can remember, health was a concern. 

When I was about 8 or 9 years old, we went on a mother-daughter trip to the Dominican Republic. I was SO excited to be going somewhere so exotic. It was my first time outside Canada and the US, and I was giddy that I would have this special time with her. We were barely 24 hours into our trip when she became incredibly ill. She barely left the bathroom for days. I was terrified, scared, and so desperately shy I didn’t even want to leave the hotel room. I remember sitting by myself at a table in the restaurant at the all-inclusive resort, trying to eat lunch but quietly crying into my plate feeling so alone and sad that she wasn’t able to be with me. 

It only got worse from there. As with many autoimmune diseases, her symptoms waxed and waned. Sometimes she was fine and seemed the picture of health. At other times, her whole body hurt and she could barely leave the bed. For a long time no one knew what was going on, until finally she received her diagnosis: Systemic Lupus Erythematosus and Rheumatoid Arthritis. By that point I was in high school and getting used to the rhythm of surgeries, hospital trips, and doctors’ visits. It was two steps forward, five steps back, one step forward, three steps back. This slow, terrible, frustrating process of physical degeneration. 

At the time, our understanding of autoimmunity was so minimal I can remember her telling me that, because it was a dysfunction of the immune system, her doctors were hopeful that research into AIDS was going to shed light on her disease. She explained it as the opposite of AIDS – rather than the immune system shutting down, it ramped up and attacked her own body. It’s amazing to think this line of thinking was entertained as recently as 30 years ago. (To be clear: yes, autoimmunity is a dysregulation of the immune system where it attacks self tissue; but no, it’s not as simple as just being the opposite of AIDS.)

She was loaded up on anti-inflammatories and massive doses of immuno-suppressant drugs. They suppressed her immune system so well, she was vulnerable to even the most trivial physical assault. One time she had a hangnail that got infected and turned into a severe infection all the way up her arm. She was hospitalized for almost a month for that infection, on massive doses of antibiotics so as not to lose her arm. From a hangnail

Autoimmune disease was not her only health challenge. She also had breast cancer and pulmonary fibrosis – two diseases that can be deadly in their own right. Her poor body was beaten down at every turn. And while she was in many ways a medical miracle, it was ultimately the very medications keeping her alive that led to her demise. She lost her life in 2011 to side effects from the extensive cocktail of drugs that were keeping her immune system in check. 

It will come as no surprise to learn that watching my mother’s experience up close was a huge inspiration for me to embark on my own personal journey in the field of health and nutrition. I knew there HAD to be a better way, and set off to find it. In fact, it was the desire to help individuals like my mom with incredibly complex health challenges that brought me to Restorative Wellness Solutions in the first place. The tools we teach are the best I’ve ever found at getting to the root of the dysfunction driving autoimmunity. 

Imagine my dismay when, part way through my pregnancy with my second daughter, I discovered an imbalanced thyroid along with thyroid antibodies on some routine bloodwork, and received the diagnosis of Hashimoto’s Thyroiditis. My own autoimmune process at work… It was devastating and terrifying. Was history repeating itself? Not to mention the imposter syndrome of developing the very issue I specialized in reversing! 

In that moment I realized that this autoimmune presentation was a gift: it was a chance to rewrite history and to demonstrate profoundly that there is a different way. I do not have to repeat my mother’s path. I have access to tools that didn’t exist when she was sick and a level of understanding that, while still nascent in the grand scheme of things, is far beyond the thinking at the time of her diagnosis and care. 

And so I dug in. 

I used all the tools and strategies I use with my clients – the tools and strategies we teach here at RWS – and while the journey isn’t over, I can tell you from this vantage point, 5.5 years after my original diagnosis, it’s looking pretty darned good. I have no symptoms of Hashimoto’s Thyroiditis. I live a full, healthy, energetic life training for marathons, running two busy businesses, and parenting two active kids. I keep a close eye on my labs and key markers to stay ahead of anything that’s brewing. I am rigorous in my self care, with my diet and supplement regine, with my sleep and all the aspects that go into my emotional and physical wellbeing. 

I have made it my personal mission to ensure that we continue to rewrite history – that stories like my mom’s become the exception, not the rule. This is why I joined Restorative Wellness Solutions, and why I have dedicated so much of my professional life to ensuring these tools are shared as far and wide as possible. Will you join me?

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