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Living a Chronic Life: Complex Regional Pain Syndrome and the Family

Ross McCreery

RossMcCreeryStory_Autoimmune_FamilyPhotoIt seems like just yesterday I was writing from a place of uncertainty. But it was actually 10 years ago when I was diagnosed with Complex Regional Pain Syndrome (CRPS) followed by Osteoarthritis two years later.

Without a doubt, the last ten years have been like riding the world’s scariest roller coaster – never knowing what’s coming around the corner. My days are filled with emotional stories and events. I’m often asked by others, “How do you handle this life altering diagnosis?” My answer: I won’t let CRPS or Osteoarthritis define who I am or what I do with my life.

A Family that Fights Disease Together

Sometimes my family and I don’t stop to think about how chronic illness affects us.  But it does. Every day. Illnesses like these have a huge impact on how a family functions.

I have a wife who watches the days play out in front of her, knowing there is very little she can do to help me. My children would like nothing more than to run up and jump on me in the mornings. They can’t. I’m left having to tell them “don’t do that” because “Daddy’s sick.”

“It is gut wrenching trying to get my family to understand a disease that I’m still learning about myself.”

Communication is Key

My family makes time to talk about the challenges we face and work on how we can make things better for the family as a whole. There are still misunderstandings. It takes a whole lot of listening and explaining things to each other. It’s the best way to work through the challenging ways that CRPS and Osteoarthritis impact us.

Living a chronic life has taught us how to have grace for one another as a family.  It’s taught me that we all need to have open lines of communication.

“This isn’t about just me.”

Trying to Focus on the Positive

I don’t want to paint a negative picture of what family life is like.  In a lot of ways, this illness has made our family stronger.

An illness like CRPS changes how you go about every-day life. There are days that my pain is so bad that it changes me emotionally, causing me to be grouchy or short. Those days, I humble myself and explain, “sorry that daddy was a grouch today, the pain got the best of me.” This helps my children understand. There’s a lot of give and take in order to support one another.

Each Family is Unique

Every family is going to face different challenges. There are lots of days that I want to be angry for how my illness has affected our family. But what good would that do?

“I try to focus on making those relationships and interactions the best I can within the parameters of my illness.”

Fostering strong relationships and interacting can take more effort when you are dealing with someone being sick. As a family, we’ve had to put our heads together to figure out the best way to do that.

Checking In

This isn’t a problem that you deal with once and it goes away. It takes checking in with one another every day. This ensures we are there for one another when we need it the most. This is a fight that the entire family is taking on, not just me.

Unless they find cures for both of the diseases I’ve been diagnosed with, then family life will always be a balancing act. So it means being in tune and aware of how chronic illness can affect our family.

“We need to keep educating ourselves and growing from our experiences.”

Lastly we need to recognize how this has brought us closer together as a family. Through our hardships have come stories of encouragement. My chronic illness has taught us if we stay strong as a family together we can overcome anything.

You and Your Family Don’t Have to Do it Alone

I can’t say enough about the support that Smart Patients has given me. They have provided me with a second family. The difference with Smart Patients is that the other members understand and respect that I am an expert in my own body. I have been able to make connections with others who suffer from chronic pain and grow and learn from them in so many ways.

 

About the Author
Ross McCreery was born and raised in Vancouver, B.C but currently resides in Regina, Saskatchewan with this wife and two children.  In 2006, he was diagnosed with Complex Regional Pain Syndrome (CRPS), which has roots in autoimmune disease, and two years later Osteoarthritis. He currently writes about his experiences dealing with chronic illness and living with chronic pain on his blog, Painfully Optomistic (www.painfullyoptomistic.com). This past year he was successful in having legislation passed in the province of Saskatchewan proclaiming Nov.2 as CRPS Awareness Day in the province. Currently Ross is involved in projects such as writing articles for a new magazine being published and a book is in the works as well.

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Comments

  1. I agree – there are positives that have come out of my RA journey for sure. And connecting with a community is crucial. I’ve learned so much about healthy living and understand much more about the effects of diet on our lives. I’m thankful that my kids have a better understanding of this too.

  2. Elizabeth G. Brownlee says:

    Sometimes difficult questions have to be asked about the genetic component of CRPS. If we know that those family members who get the disease at some point become unable to work and support themselves and we know they suffer through life starting during the teen years, should we
    1) be open to telling potential partners before having children that this condition exists in the family;
    2) should tough questions be asked about whether more children should be brought into a life of pain;
    3) should we seek partnerships with people who already have children, realizing it would be difficult to adopt children with the crps disability.
    Very difficult questions.

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