I Can't Do Chronic Pain/Chronic Illness For the Rest of My Life...Can I?
My ex nicknamed me, "Sweet Girl." It wasn't ironic or sarcastic..it was sincere. I was a happy, kind, thoughtful, innocent wife. I loved my life. I had a close-knit group of college friends that were all, my "best friends," I was building a successful career, I was a hopeful, loving newlywed, I was volunteering at my local animal shelter ...a true Daddy's girl, even training for a half marathon to raise money for the Leukemia Lymphoma Society in honor of my Dad courageously winning his battle with APL leukemia 7 years earlier. Before you hate me and the fairy tale life, I led...just know, that at the ripe old age of 28, it all came crashing down...and exploded on impact...with 3 simple words: "You have endometriosis."
In 2008, endometriosis was still a "mysterious" medical disease - the equivalent of fibromyalgia today. To further the blow, I was lucky to have the rarest of rare- deep infiltrating endometriosis - I had surgeries with the world's best and brightest- one of them trained by the founder of the surgical procedure for the disease. I tried hormone replacement therapies, anti-depressants, anti-convulsants, anti-anxiety, anti-inflammatory, and anti-psychotic medications. I tried yoga. Drastic diet changes. Physical therapy. Meditation. Acupuncture. Praying. Organic-only products. Massage therapy. Talk therapy. Support groups. Exercise. Weight loss. Hot baths. Heating pads. Cold compresses. MRI's, CT's, ultrasounds...Botox shots. And, a smorgasbord of doctors each with various specialties. All to no avail. And, a few months later, 4 more words would further shatter the loved life I was desperately trying to hold on to: "You're in chronic pain."
When you're diagnosed with a chronic illness and/or chronic pain...no one gives you a handbook...a manual...a troubleshooting guide. Instead, it's all trial and error....and the errors...take massive tolls and casualties along the way. Seemingly overnight, I went from wearing suits, and 4-inch heels, to living in pajamas - I went from having the best of girlfriends to isolating myself - I went from happy and hopeful to bitter and depressed - I went from being introspective to being an Oscar-winning victim. I was trapped in a body that was in pain, a mind that wanted to escape and a life I somehow managed to burn to the ground in 60-seconds flat. Can I have a show of hands...anyone?
Having a chronic illness and/or chronic pain takes energy...a lot of energy. Energy I didn't have - to get up and get dressed and go to the millionth doctor appointment - to get up and get dressed to go to a family celebration or holiday - to get up and get dressed to run errands...or work...or walk the dogs...or go food shopping...or do the laundry...or, well, you get the idea. It first became more manageable to cut out the unnecessary things...and then, it became easier to cut out everything. Including being the "Sweet Girl," my moniker described.
Even though, as human beings, we have all experienced pain, describing the labyrinth of symptoms and the emotional and mental toll chronic illness/chronic pain takes to our closest loved ones, seems like an impossibility. The more misunderstood we feel, the lonelier we feel. The lonelier we feel, the more depressed we become. The more depressed we become, the more anxious we become. The more anxious we become, the fewer patience we have. The fewer patience we have, the angrier we become. And the angrier we become..., the more hopeless we feel.
Full disclosure, I had turned into a monster. I didn't even know who the hell I was. But what I couldn't verbalize was how unfair I thought this all was - how angry I was - how terrified I was - how confused and exhausted I was - the carousel never stopped turning (Grey's Anatomy reference, no?). However, the truth of the matter was I had NO idea how to cope with the sharp, stabbing, shooting, burning, pulling, dull pain that I seemed plagued with every minute of the day. I had NO idea how to act or react in the face of my body betraying me. I had NO idea how to grieve the vibrant, active, patient, hopeful, happy person I was just a few short years ago.
And so, I looked for people to blame because chronic pain wasn't MY fault...so it HAD to be somebody else's...right? God - for obviously hating me? Karma because Life was being too good to me? My ex for choosing the surgeons? The surgeons for not doing their jobs? The pain management physicians for not controlling my pain? How was I ever going to live the rest of my life like this? I could barely even think about living it for another 3 hours.
Never ONCE though, did I look at what I was grateful for. Don't start hating me again...just listen. I know it seems heartless and a bit "psycho-babbly" to go down this route with you...but take my story as a cautionary tale. You see, what I was blind to was the fact that I had a supportive, loving, unconditional marriage, I had a beautiful home, I had an understanding, flexible job, I had caring, loving parents. We were financially blessed, which provided the best of healthcare. We had handfuls of friends. My loved ones had their health - and I had my health outside of endometriosis and chronic pain. But I didn't see any of that...until, it was all taken away from me...overnight.
My Dad was diagnosed with glioblastoma multiforme brain cancer and tragically passed away at 58-years young. The grief was so terrible that I could only focus on how badly I hurt -from my physical pain - my emotional pain and my mental anguish. I never really understood what massive heartache was until I lost my Dad. I would have traded a lifetime of physical agony to just breathe without it literally hurting. Then, my marriage crumbled a year later....and I gave up. Totally. And completely. All of a sudden, I would have given ANYTHING to go back to "just" having endometriosis and chronic pain - ANYTHING.
With nothing left to lose, I decided to attend the country's best in-patient chronic pain recovery center in New England. For those of you who don't know what a chronic pain recovery center is, it's essentially a 28-program that teaches non-pharmacologic pain management and emotional coping skills to help navigate through the minefields of chronic pain. Do you know what my first group class was? Gratefulness.
A few days later, I made a choice to stop crying for the life I lost...and begin building a new life to look forward to. I started to realize that I couldn't change the past...but I could change the present - which would lay the foundation for a better future. I could change my perspective. I could change the way I thought. I could change the way I acted - reacted. I could accept that my life had changed- changes I wanted, changes I didn't. I could stop existing in my life - waiting for it to begin once the chronic pain stopped...and realize I could start creating a new life worth living - in spite of the chronic pain.
I found love again. I made a new home. I began a new career. I found happy again. I was reintroduced to the "Sweet Girl" I used to know- she had changed, alright- but she was stronger and wiser, more compassionate and spiritual, more authentic and centered than she had ever been before.
Don't misunderstand me - it was all so messy. When a toddler is learning to walk, they have a triumphant moment once they put one foot in front of the other...but then they fall down. And get back up. And fall down. And get back up. I have spent the better part of 6-years doing something similar. Eventually, the child begins to walk without falling down after lots and lots of practice. So have I. Perhaps, the even better news, is so can you.
I was recently diagnosed with an autonomic disease that causes my resting heart rate to spike into the 180's-190's (a normal resting heart rate is anywhere between 60-90 bpm). It was a significant blow. Mainly because it took months and months of testing, medications and doctor's appointments to diagnose. I had a few mini-meltdowns which sounded something like, "You've GOT to be kidding me?!" "WTF did I do now to deserve this?!" "How much can one person take?!" I'm human, ya know? But, I decided to give myself some "time off" from the doctors, and the testing...as long as I followed up with the specialists my medical team needed me to. I decided to tell myself it was okay to fall apart...as long as I put myself back together. I decided to stop thinking of how effin' tired I was going to be by the time I turned 50 and focused on the one day I was currently living as a 38-year old. I decided to be happy with the progress I have made - because 8-years ago, this would have been a fatal blow.
There is NOTHING simple about chronic pain. Not one thing. Changing your perspective and outlook on having a chronic illness/chronic pain is a long, hard road. Accepting your "new life" - your new "limitations" is a long, hard road. But I promise you, the rewards are so much greater than the risk of trying. Hold on to this: A few days after I "graduated" from the chronic pain recovery center I was mistakenly sent an email from an unknown sender. It was a photo and over the photo were these words: "You were given this life because you are strong enough to live it."
Christina H Chororos is the founder of Kairos Chronic Pain Coaching. Additionally, she is a certified Integrative Wellness Life Coach and has been a chronic pain sufferer since 2008. Christina established KCPC to help other chronic pain sufferers help let go of the life they exist in to create a new life worth living. To find out more, please visit https://www.kairoschronicpain.com