How our Chronic Love Club came to be - in a nutshell!
What is CLC? Chronic Love Club is a project dedicated to those with chronic illnesses. Our goal is to create an open community where we can inspire, share, and connect with like-minded souls. We believe that by showing love and kindness towards one another, we can get through anything that chronic illness throws at us!
How did CLC come about? After meeting each other on Instagram, our friendship quickly became a refuge for one another during the many ups and downs that come with an undiagnosed illness. It was through these difficult, yet extremely supportive times that we decided to create #ChronicLoveClub for others looking to forge similar, life-long connections.
Why the Lotus? We chose the lotus because of its natural beauty and symbolism - both figuratively and literally. In many cultures, the lotus is seen as a metaphor for life due to its nature of blooming above mud and murky waters. For us, the lotus represents the ongoing determination and perseverance that patients like us acquire during our long and tedious journey of a chronic illness.
Aside from creating a safe haven for all of our friends fighting chronic illnesses, we would eventually like to donate a portion of our Etsy sales to various charities, recommended by our followers.
You're on this mission with us; let’s see the amazing places it can take us!
Derek & Michelle
Read Derek and Michelle's Health Journey - CLC founders!
Hi all! I'm Michelle, one half of this club. I have a sidekick cat named Big, I love Survivor, and Disney songs make me happy. But that’s not what brought me here... When I was 12 years old I was diagnosed with Type 1 Diabetes. No, this isn’t something you get from eating too much cake, it is an autoimmune disease where the body mistakenly attacks the insulin-producing cells in the pancreas. You kind of need insulin to live. And when I say kind of, I mean you will die without insulin.
Little did I know that years later, I’d be hit with some other some more life-changing diagnoses. It all started with extreme fatigue and spiraled down from there.
After 7 years of searching for answers, I was diagnosed with a rare neuromuscular disease called Stiff Person Syndrome.. In SPS,, the muscles in the body slowly become rigid, causing problems walking, intense muscle spasms that can break bones and chronic pain.
I live with co-morbidities of Stiff Person Syndrome and Diabetes, like POTS, Neurogenic bladder, intestinal dysmotility. Lastly, I'm an open heart surgery survivor after developing a massive blood clot in my heart that had adhered itself to the atrial wall.
Ending the stigma surrounding mental illness will always remain an important cause for me as I live it.
The only way I’ve gotten through this is through the friendships I’ve made, and the other chronic illness fighters I’ve met along the way. People who taught me how to be resilient inspired me to take scary steps, and people who loved me through it all without judgment. And I’ve learned that a lot of us would not be able to do this without one another. I’m hoping in this community we can learn to lean on each other when times get tough and cheer each other on in good times and bad.
Welcome to CLC! I’m the other half of this venture! Where do I start? Well, my health journey began a looooong time ago (not in galaxy far, far away) while I was attending the University of Guelph for a degree in criminology. The first few symptoms to appear were nothing more than annoying muscle cramps and spasms during the many hours I dedicated to my favourite sport - volleyball. These complaints eventually progressed to debilitating gastrointestinal, dermatological, neurological, and psychiatric symptoms that kept me away from exercise, sports and my dreams of becoming a police officer. I scoured the literature for natural therapies and shelled out a lot of money for naturopaths, homeopaths, and every other avenue of natural health. Conventional medicine was failing me and so was alternative medicine. I became severely depressed, angry, anxious, lost and completely broken.
Eventually, after consulting 18 local specialists and visiting Johns Hopkins Hospital in Baltimore, a neurologist from McMaster’s Neuromuscular Clinic in Canada cracked the case with an antibody test through Mayo Clinic. My intuitions were validated as I was diagnosed with a rare muscle disorder called Isaac’s Syndrome, or immune-mediated neuromytonia.
Although most of my symptoms were explained by the neuromuscular diagnosis, I decided to pursue more investigations for a mysterious set of recurring symptoms that only appear after physical activity. Finally, after consulting another 10 specialists between 2015 and 2017, my immunologist has decided to treat me for an autoinflammatory disorder (Interleukin-1 mediated disease) after genetic testing at SickKids revealed a variant in the TNFRSF1A gene. We've decided to give a drug called Anakinra a shot - literally.
It took me a long time to adapt to my situation. I learned that when your back is up against the wall, and there is nowhere to run, you learn to work with what you have, even if all you have is patience. Some goals and dreams will come quickly and others may require a tremendous amount of persistence. Keep moving forward, no matter what. “The race is long, and in the end, it’s only with yourself.”
It is through these life experiences that I’ve been able to draw strength, wisdom and a desire to help others. My mission is to bring my own experiences and daily wisdom to the world – one post at a time! 💛 #ChronicLoveClub