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Living With Sjögren’s

Patient Stories

Christin's Story

Christin's Sjögren’s story begins with a medical mystery and takes us through a journey from diagnosis and grief to finding a new purpose with the Sjögren’s Society of Canada (SjSC). Her story will be familiar to many others who have the disease. “I believe that I had it for years prior to my diagnosis. I always had the weirdest physiological symptoms pop out of nowhere”. Although her mother also has Sjögren’s, Christin didn’t make the connection. She was experiencing symptoms like joint pain, skin rashes, dry mouth, difficulties swallowing, chronic fatigue, brain fog, dry eyes, and photosensitivity for many years, She noticed that no matter how much she focused on dental hygiene, she experienced rampant tooth decay and breakages. Her skin rashes were eventually determined to be cutaneous lupus. Finally, in July of 2017, her rheumatologist confirmed her diagnosis of Sjögren’s Disease.   

One of the biggest challenges confronting Christin was acceptance of her new normal. This is how she describes it: “As a Mom, partner, and friend, we want to be the best version of ourselves and show up for the people we care about the most….but having a chronic condition can make it extremely difficult to be the best version”. She also “grieved the old me for a long time” and said she has “to remind herself that I cannot do things the way that I used to and that’s okay.”

After her diagnosis, Christin began researching and educating herself about Sjögren’s and quickly found the SjSC and became a member. She realized that when she spoke about Sjögren’s to her family, friends, and co-workers, it was the first time they had ever heard of the disease. Increasing awareness about Sjögren’s became an important cause for Christin. She educated everyone in her life about the daily struggles of people who live with Sjögren’s which also helped to alleviate the guilt that she felt at times for needing to alter her life, pace herself, and rely more on her support system.

Christin’s Sjögren’s journey continued in November 2020 when she volunteered to take on the role of SjSC Support Group Leader for Saskatchewan. Here was an opportunity to provide fellow patients with a safe space to share experiences and stories about living with the disease. Most of her meetings are virtual using a video-conferencing platform which allows members from all over the province to participate. She recalls that she was overcome with emotion at the first meeting when she finally met other patients with the same disease. Between meetings, Christin keeps in touch with her members with texts, phone calls and e-mails, and for those who are newly diagnosed she spends extra time to support them and provides information about doctors, products, and other useful resources. This is how Christin describes what she enjoys the most about being a Support Group Leader: “I found purpose since stepping into this role and love having my very own Sjögren’s family. She encourages others to “take the leap” and volunteer to lead a support group.

By September 2021, Christin was ready to take on a new challenge as a member of the SjSC Board of Directors. As a board member, she is particularly interested in awareness initiatives, a cause that is very important for her.  She also enjoys attending the SjSC virtual national patient conferences and town halls as well as participating in fundraising campaigns.

Now that she has had Sjögren’s for over five years, Christin has learned so much during her Sjögren’s journey and is happy to share advice with her fellow patients:

  1. “You are not alone, and it’s okay to not be okay. There’s a whole community of Sjögren’s Warriors out there waiting to support you along your journey. The people I have met through the SjSC have not only become my friends but also have become part of my support system
  2. Take things one day at a time. It’s not just about accepting your “new normal” but embracing your diagnosis. I promise that in doing so, it will unlock an even deeper strength within you that you never knew existed.
  3. Be positive! Sometimes it can be easy to get stuck in a negative mindset, but it’s important to find joy in the little things.
  4. Become a member of the SjSC, join a support group or volunteer to be a Support Group Leader.”

Oh, and one more thing…..

  1. “Don’t leave the house without being prepared (eye drops, lotion, lip care, prescriptions, etc)!!”

What’s next for Christin? As she looks to the future, she will continue to strive to be the best version of herself and remain focused on increasing awareness of Sjögren’s through her important efforts as a Support Group Leader and SjSC Board Member.