- The greatest defence or treatment against CRPS is knowledge
Many patients with Complex Regional Pain Syndrome (CRPS) are known to be at risk of suicide due to the severity of the pain and its comorbid conditions. This risk is often associated with affective instability—an indicator of emotional dysregulation. — National Library of Medicine
According to the McGill Pain Index, CRPS ranks among the highest recorded pain levels, with a pain score of 42 out of 50. That’s higher than both amputation and natural childbirth. Part of the reason for this is that there’s no known medication or therapy that can cure it. And yet, despite this, some medical professionals still refuse to acknowledge its existence. Just because something can’t always be seen with the naked eye doesn’t mean it isn’t real. We breathe in oxygen every day, and yet we can’t see it. Nobody walks around saying, “I don’t believe in oxygen because I can’t see it.” The fact that we’re alive and breathing is accepted at face value by most people—that something called oxygen must exist.
I remember being in high school—grade 8 or 9, I think—and coming across the following question in a biology test: “What is the test for water (H?O)?” I went completely blank and wrote, “Take it and drink it. If you live, it was water. If not… well, then I guess it wasn’t water.” The question was worth two points, and I was awarded a “bonus” point for originality, even though the answer was completely wrong. But in a strange way, that sums up how many people think. If I can’t see it, touch it, smell it, hear it, or taste it—it must not be real. And for some reason, that’s the same mentality that drives a large number of medical professionals. They don’t believe in CRPS because they haven’t experienced it or can’t “prove” it in the same way as other conditions. Meanwhile, thousands of people are living with this disease, dealing with immense pain every moment of every day.
I realised the truth in something my spine specialist said at my six-month check-up after diagnosis: “The greatest defence or treatment against CRPS is knowledge.” In other words, trying to understand something that, by its very nature, defies understanding—by learning what it does to me, what triggers it, how I need to deal with it, and how I might even help others who are going through the same. The real power lies not just in having that knowledge, but in what you do with it and how you let it shape your response. I could let it become part of the heavy baggage CRPS brings, seeing the glass as half-empty—always focusing on what’s wrong and how much worse it’s going to get. Or I could use that same knowledge to soften the blow, to prepare for flare-ups, to figure out my limitations and be creative in managing them, in ways that limit the damage to my hand. Like knowing I need to have a heat pack ready after a challenge so I can show some love and care to my hand.
So it’s not just about learning more about the disease—it’s also about learning what works for me on every level: physical therapy, brain training, psychological therapy, emotional work, spiritual resilience, and, where possible, medical treatment.
Having gone through what I have so far on this journey has taught me a lot—about what to expect, what to try, what to avoid, what to do, and what not to do. Yes, I’ve made mistakes in how I’ve dealt with my hand, my emotions, my reactions… but I’ve also learnt from those mistakes. And believe me, my hand made sure I paid for each one. All of this is part of the grieving process. If I hadn’t gone through it, I wouldn’t have gained the understanding I now have of how to start living with CRPS.
No, I don’t have all the knowledge. I don’t have all the answers. I haven’t arrived at some perfect place where I can say, “I’ve got this.” Far from it. Maybe I never will. But I’m a hell of a lot closer than I was a year ago. Or even two years ago. And I realise now that many CRPS warriors—especially those still in the process of being diagnosed, or newly diagnosed—still have to go through these stages of grief. And nobody’s journey is exactly the same. Just as our triggers are different, so too are our treatments, and how our bodies respond to both CRPS and the treatments we try.
It’s vital to learn as much as you can about CRPS, but also to understand that not everything you read will apply to you. One of the first things I did after being diagnosed was to join a few online support groups. And that’s been great—it’s definitely something I needed. Hearing other people’s stories, while sometimes heart-breaking, can be incredibly comforting. Especially in those early days. You come to see that you’re not alone in your struggle. That everyone’s looking for hope.
One of the best things about social media is that on those long nights when you can’t sleep, there’s always someone, somewhere in the world, who’s awake—someone going through the same thing. So no, social media isn’t all bad. I’ve met people who’ve had it far worse than I do—those with actual nerve damage, people who’ve been living in hell for decades. People of all ages, nationalities, cultures, religions… people who bleed red like you and me. CRPS doesn’t discriminate. It doesn’t care about your age, your race, your gender, your religion, your culture. Anyone can get it. Though the stats do suggest that women are more likely to be affected, and that young children and the elderly are slightly less likely to develop it, CRPS can hit anyone.
I eventually came to see that although many of us share a diagnosis, the experience is deeply personal—what I endured was uniquely mine. Not every symptom I read about was my symptom, and not every struggle I saw was my struggle. Sure, it could be—but knowing what I was going through, and hearing about other people’s battles, gave me a choice: I could give in and allow it to overwhelm me, or I could work on myself and do what I could to keep from getting to that point. Gaining knowledge helped me to see the warning signs more clearly, and to act—however limited that action might be.
I also realised you can’t grab onto every remedy or treatment you hear about. Not everything is right for everyone. What works for one person might not do anything for you. So yes, you can end up wasting time, money, and energy—and build up a mountain of false hope—only to be crushed by disappointment and deeper depression if you don’t approach this journey with the right kind of knowledge.
I can’t count the number of times I’ve come across a product or treatment that someone swore by. But if I hadn’t taken that information and spoken to Hesti or Wendy—people I trust, people who know far more about medical treatments than I do—I might’ve given up long ago. If you want to gain knowledge that truly applies to your situation, you need someone trustworthy, someone who genuinely has your best interests at heart. Someone who can be your soundboard.
Whenever I come across something that sounds promising, I email Hesti. She always replies, not just with her opinion, but with actual medical facts backing up her thoughts—explaining why it might be worth trying, or why she’d advise against it. Sometimes, she sends me articles or links she believes could be useful. That’s what it means to have someone in your corner. In this fight, knowledge is power—but relevant knowledge is everything. And finding someone who helps you sift through it all is worth more than gold.
Sadly, not everyone is that lucky.
In 2021, my life changed forever when I was diagnosed with this rare, excruciating neurological condition, Complex Regional Pain Syndrome (CRPS), often referred to as the “Suicide Disease” because of the relentless, unyielding pain it causes.
For months, I felt isolated, misunderstood, and defeated. But somewhere in the middle of the chaos, I picked up a pen and started writing — not to escape the pain, but to give it a voice. That voice became a memoir: Hope Undivided – Memoirs of an Ordinary Man Living with a Not So Ordinary Disease. A raw, brutally honest account of what it’s like to lose the life you knew, and still find reasons to get up, love fiercely, and hope anyway.
This campaign isn’t just about me. It is about getting this book into the world — not for fame, but for purpose. For awareness. For the countless others living in silence with CRPS or other invisible illnesses. For the spouses, parents, and children who walk this road beside us.
Your support will go toward:
- Publishing and printing costs (Professional editing and proofreading, cover design, layout, ISBN, first run of books)
- CRPS awareness initiatives tied to the book’s launch (Fund CRPS awareness projects and educational talks.)
- Translation and accessibility efforts (including audio versions for those living with disabilities)
- Distribute my book to hospitals, doctors, and people who need it most.
- Stay mobile and present for my wife and two sons—who are my reason for everything.
My dream is simple: to reach those who feel unseen. To show them they’re not alone. And to help shift the conversation around pain, masculinity, chronic illness, and resilience. There is always HOPE!
If Hope Undivided resonates with you — whether you’ve battled chronic pain, supported someone who has, or simply believe in the power of stories to heal — I invite you to partner with me.
My goal is to launch my book in November as this will fall together with CRPS Awareness month.
Thank You for Helping Share This Story
(Every donation matters. Whether it’s a donation, a share, or a message of encouragement—you are part of this journey. To show my thanks, I’ve created a few ways to say thank you.)
Final Words
Your support means more than just bringing a book to life. It’s helping me give CRPS a voice. It’s reminding people that even in suffering, stories matter. People matter. Hope matters.
Let’s publish Hope Undivided together.
With gratitude,
JJ Ritter
https://www.backabuddy.co.za/campaign/crps-awareness
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