CRPS Took My Identity – I Took It Back

CRPS Took My Identity – I Took It Back

Editor’s Note: November is CRPS Awareness Month.

Gracie Bagosy-Young

Gracie Gean Bagosy-Young

I was diagnosed with CRPS 6 years ago after a surgery to repair damage I had sustained to my wrist while kickboxing. Yes, you read that right; kickboxing. I may not look very ferocious at 5’4” and 125 lbs, but let me tell you, I had a mean right hook! I had a full time career as an electronic engineering technician, an even busier schedule as a mom, and I had a bright light on my head that said “ASK ME TO VOLUNTEER!” Yep, I was that mom. You know her. The mom that teaches Confirmation classes, coaches volleyball and basketball, shows up to every dance recital, choir performance, athletic game, chaperones everything possible, and still manages to bake every time she is asked to! Whew-I am tired after just typing all of that! Kickboxing was my only escape. It was my “ME TIME”.

And so the story begins. After 9 months of tests, “You have Complex Regional Pain Syndrome” OK-I research and learn as much as possible. I cannot return to work. I can’t coach. I can’t kickbox. I can’t even volunteer! I am in too much pain and just too exhausted to keep up with life! My thoughts began to swirl. What good am I if I can’t work? I spent so much time earning that degree to get that awesome job. Now what? I can’t just waste away at home. Who am I now?

Learning to deal with the loss of my identity was one of the biggest hurdles that I faced along this journey that I am on. My biggest revelation was taught to me by my friend Kate. I had to learn to separate “who I am” from “what I do.” I had my identity so intertwined with my career and everyone around me that I had not taken time to separate those two out. I felt that I was worthless without my job and my paycheck.

I needed to find a way to understand that I still had worth and value on this Earth. Life was never going to return to normal. I had to adjust to my “new normal.” Hmm…what value did I have? Kate and I sat down together and drew out a thought cloud one day to help me with this. I am a woman. I am intelligent. I am a mom, a child, a sister, a neighbor, a friend….the list goes on and on. These are things that CRPS cannot steal from me. This is who I AM.

Taking this one step further, I have found additional value in this world by helping others. It helps me to help others. I do as much as I can to reach out to chronic pain patients and make myself available to them.

I believe that until we learn to separate what we do from who we are, it will remain very difficult to harness the confidence needed to fight off the depression that often comes with chronic pain.

I have a new identity now. I help others just like myself, chronic pain patients.

Gracie Gean Bagosy Young is a chronic pain advocate who contributes to the National Pain Report. Follow her on Twitter @GracieBagosy
www.ggpainadvocacy.com

Subscribe to our blog via email

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

There are 6 comments for this article
  1. Cynthia Laux R.N. at 12:46 pm

    Gracie, you wrote my story with few exceptions. Thank you! I agree that this should be required reading for all who have Chronic Pain.

    Kurt, I will stand up and be counted. I have Chronic Pain. I require Opiate medications as part of my pain control regimine. I’m out of the pain closet, thanks to you.

    Once diagnosed with Adhesive Arachnoiditis and CRPS, I fell into a deep depression. I too struggled with my identity apart from my career, hobbies and community activities. How could I contribute to society now? I believed I was wasting Oxygen and a drain on society. I was wasting space.

    A great Psychologist specializing in chronic pain (not an easy find) helped me to separate “me” from what I did. He taught me to focus on who I was and what I could do now. I believe that man saved my life. I am no longer wasting air or taking up space that a contributing member of society should have.

    I am known as the “silent warrior” amongst my friends. I have an active Nursing license and use my skills to arrange for someone to always be at a friend’s side while hospitalized (hospitals are a dangerous place to be sick). What I can’t do myself, I delegate to others who want to help. I help after they’ve been discharged; arranging for meals to be delivered, housecleaning, and other things they may need while recuperating.

    An added benefit to finding myself and helping wherever I can is that I have a tribe of friends who understand the difference between taking medication for pain, tolerance, abuse and addiction.

    I’m able to do less as a result of medication weaning for “hyperalgesia”. Four years later and my pain has only increased since that Med weaning. So, hyperalgesia? I doubt it.
    I digress.

    It’s been an incredible journey and I’ve met so many great pain warriors on this path. I’m fortunate that I didn’t give up before the miracle.

    No matter how bad the pain, we all have something to give.

  2. Stephanie at 3:45 pm

    Dear Gracie,

    What a beautiful post! As someone who also has RSD/CRPS, I was moved powerfully by your words. Thank you so much for sharing your insights and personal story.

    @Dr. Myron Shank, another commenter on you post, believes your essay should be required reading for all chronic pain patientsince and I couldn’t agree more.

    There is much that we can learn from how you have handled your CRPS, Gracie. In my case, as I am grappling with questions of my identity and worth because I can no longer work thanks to this horrific disease, your practical, poignant prose could not have been more timely. Furthermore, the advice to separate who you are from what you do is spot on. Too often in our society, we forget that we are human beings long before we had any other identity. Thank you for that reminder.

  3. allie at 2:07 pm

    Hi.I relate to you…..
    I’ve had crps since 1996,feeling so alone. 4 young children 9.8.2 and nearly 2 … (Ten months ) between the 2 youngest and a mother inlaw with dementia to look after… And coping with this ….
    Took hospital 6years be4 dignosed with rsd. In my hands/arms.doctors had said that it would spread to my legs eventually Painkillers don’t work.had my first implant 2003.then alls gud.then that battery needed changing in 2013. It does the job great for my hands/arms…really hope it does the same for my legs Over the last 20years the pain gets worse and now in 2015 I’m still in so much pain with my legs.hospitals are letting me down at all levels as you all know about….oxford and queen Elizabeth hospitals are fighting with each other on who is gonna do 2nd spinal cord implant. My life is so ruined cause of crps …… I was looking so forward to life with kids n hubby . now yet again I’m feel so along.even though there people around me. Really don’t know how long I can hold on n fight the fight I’m so tired of pain

  4. Kurt W.G. Matthies at 2:03 pm

    Grace, as i wrote yesterday, I too have a new identity.

    Chronic illness has moved me to reinvent myself multiple times in this life.

    As Dr. Mark Ibsen wrote a few weeks ago, we are sometimes knocked “to the canvass,” like prize fighters. We must will ourselves to get up. His statement was one factor in helping me get up off the canvass in recent weeks.

    It is my distinct pleasure to count Mark as a friend and confident in the struggle.

    I reminded him that in life, no matter how many times we are knocked down in life, we are required to get back up one more time to achieve our goal.

    Warm wishes to you on your journey on this road. If you see me along the way, please stop and say hello.

    Together we can defeat the evil that rains blows on our bodies and minds.

    Incurable disease? Maybe.

    Daily pain, under managed or ignored? Perhaps.

    All things must pass, wrote George Harrison. (The Beatles are part of my CBT.)

    Now is the time for all in pain to stand and be counted.

    Stand and be counted.

    Today, to count, we need to stand and be counted. There are enemies who deny our suffering and invisible disease.

    Stand up, be counted, and count.

    We all have value.

    Thank you, Grace, for counting, standing, and being counted.

    May you live in beauty.

    With gratitude and the love of a brother in pain,

    @kwgmatthies

  5. Allison at 1:15 pm

    Hello Gracie!!
    I had spoke to you about a certain therapy option for the CRPS 2, that I’ve been diagnosed with (uncontrolled) and more.
    You are a huge role model for myself!! I, myself being a mother, Biology & Environmental Science degree, managing forests had four jobs, and also was able to help anyone and everyone to the best of my abilities, before 2012.
    I fell, trying to get a car seat down from my garage and after my surgery..found out, that CRPS, stole me, as well.
    My question to you, would be..I would really, really appreciate if we could finish our discussion, as we were disconnected, aprox. One month ago, while talking?!!!
    I’m really needing your advise, suggestions, anything?!!! If you are able, and still willing?!!!

    Thank you so much for spreading the awareness, again, of this disease that has no words to describe this 24/7 pain & all other effects.

    Allison

  6. Myron Shank, M.D., Ph.D. at 12:32 pm

    This is a phenomenal post! It should be “required reading” for everyone with chronic pain of any sort.