Patient Advocate and author of the e-Book, “Chronic Pain WON’T Stop Me! Tools to Make the Most of Life, Despite the Chronic Pain,”Tom Bowen turned his chronic pain journey around through writing and networking. Here, he speaks to PPM Editor Angie Drakulich about his motivation, the work he has done to educate others, and how he manages to get through those extra painful days.
PPM: In your recently published e-book, you break pain science down into a digestible format. Based on your own experience with chronic pain, what pieces of information do you think will be most surprising, and most useful, for those reading?
Bowen: There are a couple of big ones for me. First, chronic pain doesn’t always have a cause or cure. It may never go away. Doctors, even with their best intent to help, can’t fix chronic pain like they can fix acute pain. It took several years of visiting multiple doctors, getting multiple tests, taking different pills, and even having surgery to figure this out. It’s helpful to come to terms with chronic pain as a “new normal” – accepting there’s no immediate cure and learning to live, despite the pain.
Second, pain doesn’t always mean harm. Before I learned this information, I’d constantly think about the pain – worrying about what was happening to my body and if my condition was getting worse. Chronic pain patients know what to expect from pain by the very nature of it being chronic. It’s not like getting burnt, twisting an ankle, or getting stung by a bee. Chronic pain doesn’t specify immediate danger. We don’t have to be worried or guarded.
PPM: One section in your book focuses on negative thinking and common trains of thought that occur when pain dominates life, such as “Nothing seems to help” or “My life is ruined.” Some people may argue that, positive thinking is easier said than done, or that it only helps temporarily. What would you say to them? Also, have you tried, or would you recommend professional assistance on moving past catastrophic thinking, such as Cognitive Behavioral Therapy (CBT)?
Bowen: To start with, I’d tell them changing how we think about pain isn’t just about being positive, putting on a happy face, and wishing away the pain. That’s unreal. But don’t get me wrong, a positive attitude doesn’t hurt. Changing how we think about pain is about restructuring our thoughts about pain, breaking the cycle of negative thinking by challenging negative thoughts, and gain a sense of control over the pain.
I’d also tell them, they’re right about it not being easy. Restructuring our thoughts requires daily practice. It’s not like taking a pill. It takes a commitment on the part of the patient to make it work.
Positive thinking isn’t a temporary solution. It’s a way of life. Of course, I still hurt. I just choose to not focus on the moderate to severe pain I have each day. I will not let the negative thoughts and pain win. I can live a fulfilling life, despite the pain.
CBT is, in fact, a big part of what I do to manage my pain and I highly recommend it. I learned about the therapy at the Mayo Pain Rehabilitation Center program I attended. Local licensed counselors are also available to teach CBT. (Learn more about how CBT can help with chronic pain and how to practice it at home.)
PPM: Comorbidities, or co-existing diseases and conditions, are common in people with chronic pain and you have a host of these as noted in your bio, including fibromyalgia, irritable bowel syndrome, neuropathy, chronic fatigue, anxiety, and depression. With this perspective in mind, why do you think a biopsychosocial approach to pain management is so important?
Bowen: The complexity of chronic pain makes it even important to take a biopsychological approach to manage the pain. Pain is an experience affected by our bodies, our minds, and the world around us. So why would we treat it with only biological therapies? As Dr. Rachel Zoffness said it so well in a recent article, if we treat pain as only biomedical, we’re missing two-thirds of the pain problem.
Editor’s Note: Tom Bowen put together the following figure to demonstrate how a biopsychosocial model – which takes into consideration the dynamic interaction among and within the biological, psychological, and social factors unique to each individual – may help with chronic pain. More and more, healthcare providers are using this type of model to both assess and treat a variety of conditions. A version of this figure appears in his e-book and has been modified here to include his related solutions.
PPM: Can you share a bit about your personal opioid experience? Did you ever try opioids for pain management?
Bowen: I was never what I’d call a heavy opioid user. If I remember correctly, I took a daily dose of tramadol and used oxycodone for breakthrough pain, as needed. Mayo Clinic helped taper me off both the opioids, as well as other unnecessary and potentially harmful pharmaceuticals, vitamins, and herbs.
PPM: You mention family throughout your e-book. How did family support get you through the core of your chronic pain journey and how is it helping you today?
Bowen: My family has been with me every step of the way of my pain journey providing compassion and encouragement from the onset of my pain through my current role as a pain advocate.
One of the key messages I learned at the Mayo program was personal responsibility to balance what I do to care for myself and others as well as what others do for me. Two days of the program were set aside for family members to learn how to support those with chronic pain and care for themselves. My wife joined me at Mayo for those days.
(Editor’s Note: Read more about communicating with family, friends, and caregivers.)
PPM: Tell me a bit about your group, Chronic Pain Champions—what is your goal for the group and how can others get involved?
Bowen: Chronic Pain Champions has been a win-win for me. It is my way of giving back to the pain community by sharing pain management concepts I’ve learned over my 10-year chronic pain journey to hopefully make other patients’ journeys easier. It also keeps me busy and distracted from my own pain while staying active with my past career skills, writing and marketing, and what I enjoy doing – helping people. (See also, The Making of a Patient Advocate and How to Get Involved in Pain Research.)
It started when I created a Facebook support group called “Chronic Pain Champions - No Whining Allowed” in June 2019 after a failed attempt of sustaining a local support group and seeing so much negative pain talk in other online pain groups. In my Facebook group, I share many of the concepts I learned while attending the Mayo Pain Rehabilitation Center as well as encourage people to talk about pain without complaining about it.
After several months of getting the group off the ground, I realized there’s a bigger need to get more people more information. So, I wrote a free e-book titled, “Chronic Pain Won't Stop Me” and built a Chronic Pain Champions resource website and blog – both released in December 2019.
The Facebook group, book, and website all have links to select articles, web content, and research, as well as links to helpful resources. The website also includes a pain quiz that I developed to challenge a person’s pain IQ.
PPM: Could you answer one last question – you have come so far in your journey to combat chronic pain. Surely, you still have some bad days. How do you get through those?
Bowen: Like others with daily chronic pain, I have those especially bad days. At Mayo, we learned these days will pass and created kits to help get through them. Inside the kit could be anything to make us feel better such a funny movie, favorite candy, jokes, photos, etc. While I no longer keep a physical kit like this, I make use of the tools I’ve learned and do my best to not focus on the pain.
Tom Bowen is a chronic pain patient turned chronic pain advocate. His pain-related diagnoses include fibromyalgia, costochondritis, tinnitus, IBS, post-concussion syndrome, neuropathy, sleep apnea, chronic fatigue, anxiety, and depression. Tom oversees a resource website and blog. Before retiring, he worked in marketing and communications for a Fortune 500 company for more than 20 years. He lives in Des Moines, Iowa, with his wife. His e-book, Chronic Pain WON’T Stop Me! Tools to Make the Most of Life, Despite the Chronic Painwas self-published in December 2019.