PARENTS AS RARE – EPISODE 048
Parenting & Living Life With Chronic Pain – Ross McCreery
Ross McCreery is a dad, husband, advocate, writer and speaker. In 2006, Ross was diagnosed with a rare disease called Complex Regional Pain Syndrome (CRPS). In 2016 he founded CRPS Awareness Day in Saskatchewan to educate the public and raise awareness for those living with the disease. Ross also serves as a board member for the SaskPain Foundation where he hopes to help improve and change the lives of those living with chronic pain. He also advocates and speaks to serve as a voice for those who suffer chronic pain, he’s authored several published pieces, appeared on television programs and believes in the power of a strong community of rare disease advocates with diverse voices who can encourage change and progress for all.
Can you tell us a little bit about yourself and your rare disease diagnosis story?
I was successful in my career, I was married and life was going in the direction I wanted it to go. I had just came back from China after adopting my first daughter and had what should have been a simple surgery. The swelling and loss of mobility in my hand that resulted was the onset of my disease symptoms and Complex Regional Pain Syndrome (CRPS) diagnosis journey.
What was your experience like discussing your CRPS diagnosis with your children?
We say it how it is and believe in transparency. From the earliest age that they could understand, we had conversations with them about how things needed to be done differently. Having conversations with our kids and being honest and up front with them was a daily occurrence, especially as we adapted and changed.
How have your conversations evolved as they’ve grown older?
Conversations are simpler now because they understand better and have a background living with it for awhile. We don’t have to explain as much, they’re more understanding of the situation and can figure out a lot themselves. We still have conversations with them at times as things continue to happen or change.
What wisdom do you have to share with listeners?
We don’t value our stories enough. Our stories are our power and it’s the power of the story that touches people. I encourage people to share their story.
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