by Katelyn O’Leary
Katelyn O’Leary is a CRPS Survivor who lives in Los Angeles and is a frequent contributor to The National Pain Report.
I recently visited my best friend for 8 days in Colorado Springs. We’ve been friends since we were in diapers. We went to elementary school together, high school, and attended the same college. She is basically my sister and her family is my second family. She and I are such different people. As children she preferred dolls and tiaras whereas I preferred dinosaurs and sports. We couldn’t be more opposite and maybe that’s why we have always been close. From age 2-26 we used to sleep over at each other’s houses, sharing a twin bed, confiding our deepest secrets and insecurities. As teenagers we were certain that we would never find boyfriends or someone who loved us properly. Through the years we always had each other, and with every heartbreak and every major event in our lives, we always find our way back to each other. I have always envied her for many reasons: her family, her resilience, and her loyalty to her friends.
It has always been the two of us against the world, but that all changed when she married in 2014. Watching her walk down the aisle was one of the proudest and also saddest moments of my life, knowing that from this point forward I couldn’t follow her down this path.
The past 18 months have been really hard, but she has always been supportive and a fervent believer that I will recover and move forward. Having my family so far away has been EXTREMELY hard on my morale. The isolation of this disorder causes so much mental and emotional distress. Most days I try to do some light stretching and reading to start my morning. I try to stay in contact with my mom and siblings – updating them on my day and what my doctors are saying.
The isolation I feel sometimes makes me think of myself as ONLY my disease. “Hello, my name is Katie with CRPS” seems to be stamped (though self-inflicted) on my forehead. It consumes so much of time, my days and my weeks. Visiting my best friend made me realize that I’m simply Katie. Not Katie with the pain disorder or Katie the medical malady. Just me. I didn’t have to pretend to be fine when I wasn’t. I didn’t have to hide my pain or my discomfort. If I needed to go back to the house, my best friend would turn around, no questions asked. Through all of this, she has never treated me differently, except to shower me with more love and caring. Even her pets made an effort to be comforting. Every night I would fall asleep with two cats in the bed with me. It was the perfect vacation; I could relax and just BE.
The trip made me consider a lot about my treatments and overall health. My fight towards recovery has made me forget so much about myself and who I used to be. When your future is somewhat of a question mark, you tend to question everything – and forget the things that matter. So much of the previous things I used to do, I am either too weak or tried to participate in. Sometimes I lay in bed all morning with ice packs on my leg and Netflix blaring on my iPad mini. But we as CRPS patients need to do more to regain our sense of self and to remember we are loved.
How to Deal
- Make sure to fulfill what I like to call, the Triangle of Treatment:
- Consider adopting a therapy animal. Having a companion to come home to every day after a doctor’s appointment or a treatment is such is a rewarding and lovely routine. Plus, if you register your pet as an emotional, physical, psychological, etc. animal, in the state of California, you do not have to pay Landlord or apartment fees. I myself adopted a cat – and it has been worth it.
- Stay educated and Get involved: The more I read about my disorder, the more I am able to deal with the scary treatments and the better prepared I am when dealing with this. On the flipside, getting involved in fundraisers (like the 10k/5k/1 mile walk/run called “Quench The Fire” which raised money for the USC pain center and CRPS research) is incredibly rewarding. Meeting people with this disorder in support groups, fundraisers, and conferences spreads awareness and can only help.
- Be honest with your feelings. Don’t pretend to be fine when you’re not.
- Stay connected to your friends and family – even if it’s just through text.
Seeing medical doctors/specialists, a psychiatrist, and a therapist. In order to fight CRPS and other disorders, you cannot simply focus on the physical. Chronic illnesses require so much of you – and eventually your emotions and well-being could plummet from depression and anxiety. The anxiety of not knowing if you’re going to get better, being away from family, and suffering from extreme pain affects all parts of the body.
Diseases and disorders apply so many labels to our lives. But we don’t have to pin them to our chests. Don’t lose sight of who you are, and where you came from. And if you can’t remember – that’s what friends are for.