Friday, November 6, 2015

Stop Discrimination against My Sisters in Pain, Sign the Petition

Are you a woman in pain? I am. My sisters, we have been identified in the Institute of Medicine Report, “Relieving Pain in America…” as an under-served community that is discriminated against when it comes to treating our chronic pain. It’s time for that to stop!

I have experienced pain most of my life. I had my first cystoscopy at age five. At puberty, I developed migraine headaches and irritable bowel syndrome. I have lived with premature degenerative disc and spinal disease for 30+ years, and have come to know other chronic pain and health issues intimately, fibromyalgia, myofascial pain syndrome, Hashimoto’s, ME/CFS, post herpatic neuralgia, and interstitial cystitis.  After having extensive shoulder surgeries, I returned to work as a nurse (considered to be as physically demanding as that of a construction worker). I paid my own way as a single mom with two small children. I was board certified in emergency nursing and I was an expert witness as a legal nurse consultant. I was a typical type A. But eventually, my ability to keep up - caught up with me.

I will never forget the words on my neurocognitive exam report, which concluded I have significant short-term memory loss compared to others my age and education. I didn't need a report to tell me that. I knew I was slipping. But the hardest thing to bear were the words that said I would be a danger to patients. You see, I was expecting my symptoms would lead to a treatable diagnosis. I would get fixed, and I would get back to a job I loved dearly. After all, I pushed through any obstacle in life. But, it was not to be. All I could do now was put my head in my hands and weep.

“Out of suffering have emerged the strongest souls; 
the most massive characters are seared with scars.”
~Kahlil Gibran

Soon after, I found it was easier to let people think what they must rather than defend something I was struggling to accept myself. I learned the worst, and the most damaging, was not the pain, but the change in the way I was perceived by others. At the most vulnerable time in my life, I had to accept that my family, friends, colleagues, and physicians had forgotten about the person I once was. Through therapy, I learned the very same people that criticized me for seeking pain care, would indeed do the same in my position. I learned that chronic pain could only be appreciated if you experience it. I learned that I needed to be compassionate with my otherwise healthy friends and family, because they have no control over their perceptions anymore than I have control over my pain. But I also learned there is no free ticket to being a bully, which resulted in learning the importance of choosing my friends wisely. 

Women are caretakers, not the other way around. Maybe when we step outside that role, bias emerges. But, as human beings, we all deserve to be treated with the same respect and to have access to the same pain care. I could tell horror stories about the abusive comments and treatment I have suffered at the hands of those who took an oath to do no harm. But from adversity comes opportunity. I took control, and over a decade later, I now have a great team of healthcare providers. But, because of the amount of time it took to find providers with whom I could build mutual trust, I fear what will happen when my husband and I relocate. At my age, I will be dead if it takes that long again. This should not be the case. Regardless of our socioeconomic status, race, gender or where we live in this country, we should all have access to the same pain care and be treated with the dignity and respect we deserve. 

If you are a person living with pain or a caretaker, male or female, stand with your sisters in pain become the catalyst for making a difference. Stand with us as an advocate for changing pain care for women. We are in this fight together and we must serve our compassion by being supportive to one another. 

Cynthia Toussaint has made it easy for us to speak up. Please take a minute, that’s all it takes, and sign this most important petition.

End Pain Care Bias Toward Women 

In Chronic Pain

(click on the title)

Don’t stop here. Share often and cast your net beyond the horizon.

In healing and hope, Celeste

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog

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