After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?
How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.
Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.
Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).
HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.
I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?
Your life matters. Your story matters. Your voice matters.
To share your story or to learn how you can get involved in advocacy online, email email@example.com
I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication? No one should be suffering like you are.”
Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.
When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.
This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.
People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.
Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.
Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.
You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.
I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!
You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.
If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?
Wrong! They aren’t shutting us down, they’re starving us out!
We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.
You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently.
Even though it’s not your job to be an inspiration… you already are. You matter.
Email firstname.lastname@example.org if you would like to share your story or to ask how you can get involved with advocacy programs online.
The 15th of October, a very beloved, beautiful soul and long-time health activist, Mary LaBree passed away due to complications from RSD/CRPS. Here, one of her best friends, Mary Jane Gonzales shares a heartfelt poem with us along with the late Mary LaBree’s story. This was originally posted on the RSD/CRPS awareness Facebook page: In the Blink of an Eye.
By Poet/Author, Mary Jane Gonzales:
“With this being RSD/CRPS Awareness Month, I’d like to begin the month by acknowledging the work of Mary LaBree who is no longer with us. Mary shared a small part of her story with us in September for Chronic Pain Awareness, but was reserving the bulk of her story for an impending book. For those of you who missed her post back in September, you can read it below. Though it offers just a glimpse at her story, I would like to highlight some of her accomplishments that I know of. Her and her daughter’s RSD Support Group was the second support group in the country, and the first to get a state proclamation (back in 1990). She founded the New England RSD Coalition, whose function was to serve and educate: through support, seminars and fund raising. She held teaching seminars with well known doctors; collaborating with them over many years. She was a strong advocate for RSD awareness, and a key figure in the RSD community. Even recently, she was asked to speak at a conference, but had to decline for health reasons.
Before I repeat her post from September, I’d like to share a poem I wrote for her a few months ago for her intended book.
A HELPER AND ADVOCATE
A soldier, a warrior,
A patient with tears,
A helper and advocate
For so many years.
Reaching and touching
All that she could,
To help them endure
What no one should.
Searching for answers,
Seeking a cure,
For her and her family,
And all who suffer
This dreaded disease
Her reason for working
Poem Copyright Mary Jane Gonzales“
My Chronic Pain Story
by Mary LaBree
“I became aware of RSD in the mid 80’s when I went with my daughter to the pain clinic where she had been diagnosed with RSD. Then, about a year or so later, when I got hurt and fractured my spine, my daughter said she thought I had RSD also. So she took me to the same clinic, to see her doctor, and I, too, was diagnosed with RSD.
After that, I went into treatment and it took four years for me to get better. Along with Post Galvanic Stimulation, which helped me a lot, some other treatments I’ve had include:
Alphalipoic Acid (IV)
Radio Frequency Ablation
Though all the treatments have helped, none have been long lasting. As you all know, RSD (Reflex Sympathetic Dystrophy), now known as CRPS (Complex Regional Pain Syndrome) has periods of worsening, be it flares or spreads. I was fifty years old when I got RSD. I am now seventy eight. In those twenty eight years with RSD/CRPS, I have alternated between walking unassisted, walking with a walker, and using a powerchair.
In the late 1980’s, my daughter and I started “RSD Support Group”. We were the 2nd support group in the country, and the 1st to get a state proclamation (back in 1990). It was the Massachusetts State Proclamation and we’ve gotten one every year since. We chose the color red and the month of July because July is considered the Freedom Month.
Later, my daughter moved out of state and she passed the support group onto me alone. In 1997, a colleague who came up for the July “Proclamation Awards Ceremony” approached me to form an organization, which was named the New England RSD Coalition. For all these years, the function of the coalition has been to serve and educate; through support, seminars and fund raising.
I have learned much over the years with Chronic Illness. I have learned to research all that I can about this disease which has affected eight people in my family…which was devastating and heart wrenching. I have learned to advocate for both awareness and patients. I have learned things that I can do to help myself beyond medical treatments, such as:
sitting in the sun
a positive spirit
Helping and doing for others is my “secret” for living with RSD, or just plain living!”
Mary LaBree left a lasting imprint on the chronic pain and RSD/CRPS community. She is one of the first chronic pain health activists. Without her dedication in clearing a path, so many of us would still be suffering in the dark. Mary LaBree’s commitment to her cause shows that life does not end with chronic illness; she made her battle her life’s work. Thank you, Mary LaBree.
**Also read In Memory of Mary LaBree- An Original RSD Advocate from RSDAdvisory, a personal account of a long and loving friendship with Mary.
Since Mary’s passing on October 15th, very sadly, more RSD/CRPS angels have been lost. We honor them all by raising awareness about the seriousness of this disease. Our hearts and prayers go out to their friends and families.
For a non-fatal disease, far too many don’t survive.