How We Define Ourselves

How We Define Ourselves

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.

Katelyn OLeary dress

Katelyn O’Leary

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

  1. Make sure to fulfill what I like to call, the Triangle of Treatment:
  2. 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.

  3. 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.
  4. 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.
  5. Be honest with your feelings. Don’t pretend to be fine when you’re not.
  6. Stay connected to your friends and family – even if it’s just through text.

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Katie O’Leary

newest oldest
Notify of

Katelyn, Thank you for this encouraging post and insight.
I’ve been struggling with this issue a lot more lately.
Who am I? What does my future mean to me? Am I just ‘surviving’ each day…or am I truly ‘living’ life, or not??
I spend my entire day managing my pain. I become more and more limited as time/age goes on. Most anything I do can bring on more pain.
I have no ‘in person’ support system.
And lately, I just keep playing over and over in my head… ‘who I used to be’ and the desire to be her again.
Of course my mantra is ‘it could be worse’ but that doesn’t make it much easier.
I know that I am blessed in the midst of my struggles.
But, this is MY life, MY story.
I do see a therapist when I get overloaded with my self grief and talk it all out. I am a positive person but Regardless, it’s always lingering in my mind. Chronic Pain gnaws at me constantly.
I guess as humans… we will always want what we can’t have.
Keep strong! You are a beautiful person!

Danny Elliott

Katelyn O’Leary, it’s so sad that I can identify with much of this well-written column. However, I do not not suffer from CRPS and, the more I learn about that insidious condition, I am so sorry for those who have to deal with it. What I can identify with is the isolation that’s described. Four years ago, because of my wife’s career, we moved away from the town where I was born and raised. The accident that has caused my head pain actually occurred at my parents’ home. I have many friends there as well as a loving church family. So many people knew about and were understanding of my health issues. They always seemed genuinely happy when I was able to get out and about. But, moving to a new town is difficult for the healthiest person. For me, it’s been a nightmare. I’ve been dealing with my pain for over 25 years now, and I thought I’d finally made all the necessary adjustments as well as having accepted my new “life” - one filled with pain. It is so hard to make friends. I’ve made acquaintances, but because my pain requires being holed up in my “pain fortress” for days or weeks at a time, getting to know someone well enough to truly become friends seems impossible.

I have followed the steps recommended - I found a counselor to talk to and it was helpful, but my insurance only paid so much and I can’t afford to cover it myself. I try to be active with these online pain groups. I’ve researched my health issues so much that I honestly believe I am qualified to be an “expert” on electrical injuries. Finally, I married a cat person, so I have three furry friends that listen to my griping without any judgment. (Of course, I feed them and clean up after them, so they’d better listen!)

I have some close friends that are always a phone call away. I’m grateful for their friendship. But, talking on the phone isn’t a substitute for the one-on-one talks.

Finally, I have a set of rules that I’ve come to live by. But, I broke the #1 rule recently: Don’t make plans for a specific time and place. I so wanted to attend the “Rally Against Pain” in Washington, DC on October 22nd. I planned it out and everything. I was so excited about physically doing something to fight for the rights we all deserve as chronic pain sufferers. But, as it has happened so many times before, my pain flared up severely and there was no way I could go. That’s been like a final straw for me, psychologically. I know that I’ll bounce back and get out of this black hole that I’ve lived in many times over the last 25 years. Poor, poor pitiful me. It’s such a bummer right now. Fortunately (or unfortunately), there’s always tomorrow.