The Accidental Activist:  On Going From Pain Patient to Pain Warrior

The Accidental Activist: On Going From Pain Patient to Pain Warrior

By Jenni Grover Prokopy

Founder—ChronicBabe.com , Illinois State Pain Ambassador—U.S. Pain Foundation

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Jenni Grover Prokopy

I didn’t plan to become an outspoken advocate for people with chronic pain and illness. It wasn’t on the list of careers I dreamed of as a kid. I wanted to be a rabble-rouser and a journalist, sure—I’ve long strived to achieve social justice for all. But helping sick folk was not a particular concern.

Yet, today I find myself in the hard-won position of voicing the concerns, needs and rights of pain patients across the country. It’s a daily task, whether I’m explaining to incredulous bus passengers that I am, in fact, in need of the disabled seat today—or standing on stage in front of hundreds of healthcare practitioners, explaining why patients deserve more comprehensive, compassionate care.

A rocky road to advocacy

After being diagnosed with fibromyalgia in 1997 at the age of 25, I freaked out—there’s no better way to describe my reaction. I had been a young, athletic go-getter who frequented nightclubs and loved adventure. Now, I felt trapped in a body that was broken—a betrayal.

It took me years of fighting reality, of working through anger, resentment and depression about the pain and fatigue that had invaded, to reach détente with my body. It took equally long to assemble a healthcare team and a treatment plan that brought some relief. (Oh, right—I should mention I developed a handful of other conditions, too, which made it a real party!)

Eventually that détente evolved into acceptance, and I regrouped. I could still dance—just, you know, not on tables at nightclubs, but in my living room, taking lots of breaks. I could still have a thriving career, just not, well, in an office with lots of rules; instead, I formed my own company so I could build my own schedule, dress code (cute PJs!) and awesome clientele. And it worked! It wasn’t my dream scenario, but it was better than lying in bed, sobbing endlessly about the unfairness of life.

Speaking up, online

That’s when it hit me: I needed to create the very resource I had wished for when I was 25. A website with attitude, one that could help people like me with practical advice and inspiration for crafting incredible lives despite pain and illness. ChronicBabe.com was born in 2005, and has thrived ever since.

Through ChronicBabe, I’ve learned that people in pain come in all different models: young and old, wealthy and poor, straight and gay, black and white and every shade on the spectrum. Pain does not discriminate. And we each have our own unique background that shapes how we cope with pain—and a wide variance in the resources to which we have access.

My mission is to be an equalizer. No matter who you are or where you come from, I want to help you learn to love life, even if you’re in pain. I know it’s possible because I’ve done it; I know it’s not easy, and that each of our experiences is unique. That’s why I particularly love working with U.S. Pain Foundation; it’s an organization that’s diverse and feisty, and empowers so many people. I’m proud to call myself a pain warrior.

Advocacy in action

It’s an honor to join the team here at National Pain Report; in the coming months, I’ll bring you stories of fellow pain patients, perspectives from caregivers, news from healthcare practitioners, and tons of practical advice on how to be your own best advocate.

I’ll also be reporting from the frontlines of one of our fiercest battles: medication access. After almost a decade of success on a medication for fibromyalgia, my new insurance company is forcing me through step therapy—a process through which I must #failfirst on another medication (or three) before they’ll cover the original medication my doctor prescribed—the only medication that has ever worked for me.

As a result, I’m experiencing symptoms that once again limit my ability to work, to socialize, to exercise, to be—in a word—me. And it’s got me feeling my rabble-rousing roots, so watch this space for strong opinions, practical advice and stories of advocacy in action.

Take action:

About Jenni:

Jenni Grover Prokopy founded ChronicBabe.com in 2005 and has been a boisterous advocate for people with chronic pain and illness ever since. A professional speaker and writer with more than 25 years of experience, Jenni believes all people have a story worth telling. She lives in Chicago with her boyfriend, Joe, and enjoys gardening, quilting and five-minute dance parties in her living room.

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Authored by: Jenni Grover Prokopy

There are 9 comments for this article
  1. Tim Mason at 5:37 pm

    200 years ago Medicine Man say “Here, eat this root. 100 years ago Medicine Man say “Here, take this pill. 100 years later, Today, Medicine Man say, “Here, take this root”.
    I love pharmacology. Pharmacology is the oldest profession. I dare post what the next oldest profession is. I bet you can guess.

  2. Stephen S. Rodrigues, MD at 10:50 pm

    Jean Price and all who wish to understand why we have a pain epidemic.

    It has taken me about 18 years to re-discover from the archives of medicine that we all have been mis-educated, mis-directed, misinformed and left wondering – Why.

    For that matter my medical education, 8 years and many board examinations had set me up to miss managed thousands of my patients. I was innocent and followed the script which set me up to fail.

    My epiphany #1:
    If massage works, chiropractic act works, acupuncture works, GunnIMS works, wet/dry Travell [trigger point] intramuscular needing work. They all work on the muscle system = a complete spectrum of treatments for the muscles.
    My epiphany #2:
    All of the hands-on PT options do NOT work because no one has access to enough of the medicine to effectively restore the disease embedded within the muscles. So with weak, spotty or irregular treatments, the disease will just re-occur just like cancer.
    My epiphany #3:
    Attack the pain like it was a cancer with the full and unrestricted forces of all of the hands-on options in a “Pain Therapy Regime” just like we treatment cancers with a chemotherapy regimen.
    My epiphany #4:
    It works just like nature intended it to work.

    Hands-on PT is the perfect corrective medicine for body pain. Thanks to those altruistic physicians in the 40-90s who perfected the use of “hypodermic in the tissues needles” we have the answers. All we have to do is call the responsible parties to the floor and demand for no extra cost tailor-made hands-on PT treatment regimens.

    The pain pills are a double edged sword – be-careful. They will comfort and pacify you but ultimately they will take your freedom to pursuit happiness away. This this situation should ALSO be a Constitutional Right of Americans to be free of miserable pain.

    Arm yourselves with these facts. Most of your providers have no idea,clue or mindset of any of this data and are just as innocent as I was.

  3. Jean Price at 9:21 pm

    Dr. Rodrigues…wouldn’t it be nice to have a true blend of these medical mindsets, instead of them just being the opposites! I agee that muscle and myofascial treatments can bring much relief. Yet for me, most of it has been temporary. I’ve avoided several suggested surgeries, and also had some necessary surgeries with poor outcomes. So, like many people who comment, I deal with life limiting pain daily. I think what I hear you saying also is each person is individual and we need creative ways to deal with our pain. And we must advocate for those therapies to be included in Insurance coverage. Yet, I’m finding out our biggest advocate groups can’t seem to unite with other advocate organizations to get better results from the government and industry. So I’m feeling pretty powerless to change this myself. I’m aware of alternative and functional medicine, and I think there is much promise for some in persuing this type of care. One big problem is the lack of providers. And many of us are limited in our capacity to travel. Yet, again the cost can be prohibitive for many…unless it’s more mainstream and covered. I hope the Pain Foundation will contact you for further information and investigate what they can do along this line, either in providing resource information to those with pain or supporting your suggestions with future actions. In the mean time, medications are being withheld and pain levels are going up. Not a good short term outlook, is it?

  4. Stephen S. Rodrigues, MD at 12:45 pm

    I have a similar mission except mine is pushing for the use and availability for the perfect set of the corrective, restorative and curative treatments. I never thought in my 32 year career as a family doctor, I would have to be a “Pain Therapy Advocate.”

    It has taken me all this time to figure out that I was mis-educated, mis-directed, deceived by my formal MD training and unfortunately setup to fail. I’ve seen thousands of patients without the proper vetted education.

    I was trained that pain is of the skeleton and arthritis which had to be diagnosed by Xray and MRI. NOT true.
    I was trained that pain is of the skeleton and arthritis which had to treated with surgery. NOT true.
    I was trained to believe that these terms and concepts were valid and correct: arthritis, degenerative Joint Disease, NSAIDs is the best treatment, bone-on-bone, torn or worn cartilage, worn patella, torn rotator cuff, torn labrum, torn menisci, bulging disc, nerve pain, neuropathic pain, pinched nerves, radiculopathy and entrapped nerves ===> all of these words not true.
    None of these terms can fit into a formal medical diagnostic process which requires confirmation, validation and a vetting process.

    So after a few hundred of my patients failed to improve after surgery for their pain, I went back, in time, before technology and found the correct answer. Then it took me 18 years of practicing these options to be able to witness the profound results. The therapies are a “perfect match” which is the only way to treat the pain in the body. I had to get extra training in these old therapies because my formal medical training left them of the standardized program.

    This is the synopsis of what is in the archive of medicine:
    Pain is most commonly located in the muscular system FIRST!!
    The best set of restorative and preventive options can be called Hands-On Physical Therapy. This form of PT is designed to active the internal healing necessary which will revive, reinjury, restore, stimulate, rejuvenate which is the ONLY way to help completely heal muscles.

    This HOnPT is 2 categories; Outside the Skin tissue stimulation and Needling inside muscle so called intramuscular stimulation or IMS.
    Human Touch Stimulation: Kinesiology, Manipulation, Orthopedic and Osteopathic.
    Spinal Range of Motion Therapy, Continuous Passive Therapy, Acupressure and Soft Tissue Release.

    IMS w thin needles: Ah-Shi Chinese Acupuncture, myofascial acupuncture, GunnIMS and the Dry Needling. And IMS w hypodermic needling: Muscle Wet (with lidocaine) Hypodermic Intramuscular Stimulative Needling aka Travell Trigger Point Injections.

    Their are huge turf, power, mental, logical and logistical barriers in the way due to errors embedded into the minds of a few generations of medicine personnel. Many MDs, specialist and academics do not know any of this medical history or these modalities. Even the Federal and State Governmental Mandated standards of care do not include these options. The Feds will allow you to get your “knees amputated and replaced” before you can have access to these corrective therapies. Then it is too late or save your skeletal parts. Backwards. You all are stuck unless you ask or demand these old treatment options to be put back in full force and at your service. If you do not ask, the present system will not budge due to profits without you all complaining.

  5. Jean Price at 7:43 pm

    Jennie…your article describes the journey of life with pain, I think! We may travel different routes. But it’s about the same journey. I find many of us are passionate about the problems, but we get less passionate about the solutions! There is one, however, that I think would help all people with chronic, life limiting pain. It’s getting information on what I call change=loss=grief (dealing with the feelings, accepting or denying, and making healthy behavior choices). I had the opportunity to learn this in a pre-pain work experience, and it has made all the difference in the world to me. Not that life is a breeze…it isn’t! But I let go of the anger faster, I ask clearly for what I need, I know coping skills to keep my outlook from going down the drain, and I am a stronger person (if you leave out my body!) because of what I learned. I forgive myself more readily, and others…and did I mention I like my self better than I did in my days before disability happened? I’m more whole, even with pain. I’m not sure how to get this out to people in pain. But lately I’ve come to realize it’s my mission. We all need help dealing with the pain when it shakes the foundation of our wellness and independence. I’m glad you’ve found it and also found a way to share it with others!

  6. Mary H. at 3:13 pm

    For those facing garnishment of SSDI for student loans, there is a process to discharge federal student loan debt. It isn’t automatic, but your SSDI status helps greatly. Find out more at https://www.disabilitydischarge.com/
    I hope this helps.

  7. Doug at 11:41 am

    It’s so unfortunate that every single person living in pain has their own individual treatment that gives relief. Every medication cocktail is different for every patient because of the way the body’s metabolism of different medications. When a doctor finally finds a cocktail that works for an individual, they have already been through a step therapies process and just because there is a change in insurance shouldn’t mean that a patient needs to go through this whole process again.
    Now, my problem is that my insurance changed from one company to another and my new insurance denied payment of my visit to my PM because they say that I need another referral for a specialist. Granted, I have been seeing a PM specialist for 5 years and had a referral in the beginning and I explained this to the insurance company when I called them 3 days ago. They proceeded to tell me that referrals are only good for 6 months and I needed another one before they would pay. I look at this as denial of payment due to a pre-existing condition which we all know is illegal according to the Affordable Health Care Act. Basically these insurance companies are making up rules to still deny pretty existing conditions.

  8. Kr at 7:26 am

    Oh yeah and also the government stated garnishing the little bit of ssdi i was getting too this month for a 12 years old student loan i ak disgusted at this country ajd how anyone can TAKE FROM the disabled..I CANNOT EVEN DO what i went to school for.

  9. Kr at 7:25 am

    Wish i could be on whatever meds,your on. What helps you?Cuz my life has gone downhill since being diagnosed atvage 37 , id love to start my own business how do you do thay when your broke disabled and unable to work?i have noone and am on ssdi and its not even enough to eat on and pay bills each month. Drs cut my meds so im not even able to work from home part time anymore i cry every morning throughout tthr day and wonder why im even here daily now for the last 2 years since the drs cut my meds and took me off of the one drug that helped me alot. Surw wish these POSITIVE people would give detail on how they got to he so happy w life and able to live unless their family is rich i see no way or they have a husband. Well guess what due to my pain and being broke and unable to get desperately needed dental work i will spend the rest of my life alone and isolated, what options r there for someone like me?none. My family treats me like im an embarassment.i havent dated or been anywhere near a man in 3 years and 1 month and im only 41.