The Healing Feeling: How do we let go of Chronic Pain habits?
By Lynn Westfall @themodemlisa
Have you ever felt trapped in a body that's no longer yours? Welcome to the world of pain dysmorphia – where healing and perception collide in unexpected ways.
I remember first hearing the concept of phantom limb pain when I was young. The sensations of a lost limb continuing on after losing it seemed almost unbelievable at the time. Later, hearing about body dysmorphia similarly had me puzzled. How could you feel a different size than you were physically? Like chronic pain or illness, these concepts can be hard to comprehend until you experience them. Without direct experiences, humans often struggle to relate to concepts and situations, thus the lack of empathy we see in the current world.
The Journey to a New Self
As we grow and experience life, hopefully, we become more empathetic to the experiences of others and concepts that we don't clearly understand. In my case, after losing over 100lbs by changing my diet (vegan) and lifestyle, I directly experienced body dysmorphia. The weight loss happened over the course of a year, so there wasn't a real "ah ha!" kind of moment. It was work, it was a slow grind, and it was on my mind each day what I was eating and how I was exercising.
The year after was all about stabilizing and maintaining. I had seen the numbers change on the scale, but because the Hidradenitis Suppurativa (H.S.) had progressed and my pain levels were still very high, I don't think I could feel a change. The focus of my lifestyle change wasn't to lose weight, but I needed to. I had been (incorrectly) told most of my life that all my health issues would disappear if only I quit smoking and lost weight. I'll never regret quitting smoking cigarettes (2013) or losing weight (2018), but neither were the answers to my health challenges, so far.
The Slow Realization of Change
By the 2020 COVID lockdowns, I had been at my new, better weight (no longer obese, but still slightly overweight for my height) for almost two years. Even though I wasn't seeing it, my Mom, co-workers, and friends were seeing what was a brand new Me! I hadn't been this weight since I was 16; this “Me” had never before been! But I wasn't seeing it. I was wearing the same clothes, not seeing how loose they had gotten. My rings no longer stayed on and I had to get shoes almost two sizes smaller! Still, I wasn't really feeling this change; mentally, I was still craving foods I was no longer eating and dreading work-outs as I always had.
"I had never imagined myself as an average weight person; I had always been 'plus'."
Once in lockdown without anyone outside of my household to remind me, I kind of forgot I was different. When the world started to reopen in 2021, I decided to go shopping for new clothes. Really, it was a necessity at that point if I was going to be outside of the house again. The first trip back to the mall, I went to stores I was familiar with as a traditionally larger girl. Store by store, I found myself a bit too small for the smallest sizes. It was strange! For the first time, I started checking out the mainstream department stores and finding myself in the regular women's section. I tried on clothes in sizes I hadn't worn ever as an adult. Finally, I had to accept, I was no longer a size 22, I was a size 12 (more like an 11, but US women's sizes don't go there).
Really?? This was insanity! When I walked into an Express and put on a pair of size 10 pants that looked incredible, the wave of the reality of this "New Me" washed over me and felt amazing. This was just the first of many waves I would experience over the next three years as I re-experienced life as this new, physically smaller person. Swimming without the weight, sitting on an airplane, and the reality of how much less I could eat were all stepping stones that took me over four years to really absorb. I still order at restaurants like I always did, but now I have leftovers for days! It's going to be a work in progress for a long time to come.
Chronic Pain: A Constant Companion
As I said, I still have the chronic health challenges of H.S. and other autoimmune and hormonal conditions. Just like being a larger size created habits around eating, being active, and living everyday life, so has chronic pain. I have clothing requirements to keep the H.S. areas on my body clean, dry, and protected. My sleeping patterns are all kinds of nuts because of discomfort! Hormonal changes can throw my mood off and distract me for days at a time!
I hesitate to do physical activities and avoid situations that might become painful based on past experiences. Every time I have to use the restroom, there is an entire routine that has to occur because of continual wounds surrounding my groin. At times I have been completely bedridden due to the pain, bleeding, and draining that occurs in these very sensitive areas. Even talking about the current state of my physical body can bring me to tears depending on the day.
Finding Hope in Herbal Remedies
In the past year, I've been blessed with finding some amazing resources on YouTube, and one of them is Melissa Gallagher, ND – a Naturopathic Physician. Her video on herbs that balance hormones naturally gave me an opportunity to try herbal remedies that I hadn't heard of before: Rhodiola and Holy Basil. The other three I had heard of and had used, but nothing was deeply impactful, though I do believe hemp is extremely important in my lifestyle in a number of ways. I decided to invest in a 60-day supply of each from the Gaia brand even though they were on the pricey side. Within two weeks, I was shocked at how much better I felt!
I had been having very extreme hormonal fluctuations, crying spells, and loads of pain during the different hormonal peaks in my cycles, which is what sparked my Mom's search on YouTube in the first place. But the big surprise was how the H.S. pain levels dropped. The same wounds, physically looking the same, but hurting less? I'm still wrapping my head around how this works, and I'll have a lot more to talk about these herbs (and how the brand mattered!) but after 10 months, I can clearly see the difference.
The Unexpected Challenge: Pain Dysmorphia
But feeling the difference, having less pain, still isn't truly resulting in improvement in my life, and that's really what I wanted to share today. The concept of Pain Dysmorphia. Where we still function and even believe we're in more pain than we truly are and continue to function daily as if we're in the same amount of pain.
"We couldn't help but focus on the screaming purple elephant in the room and can't seem to take our eyes off it, now that it's no more than a mouse in the corner."
When we've been in pain for years, we've been building up habits, routines, and patterns all surrounding the pain. We couldn't help but focus on the screaming purple elephant in the room and can't seem to take our eyes off it, now that it's no more than a mouse in the corner. I'm not in remission, and I'm still even seeing some physical progression on the surface, but just being able to function without unbearable pain is a victory that I should be celebrating! I don't need to lay in bed because the inflammation is making it impossible to move. I don't need to soak in the bath two times a day just to calm the wounds on my bottom. I'm not glued to the couch because every step will have me screaming in agony. Yet, there I sit. Much of my time seems to still be stuck in the patterns of pain.
Breaking Free from Pain Patterns
How long does the residue of pain persist? Could I relate this to other experiences such as having my gallbladder removed; for which I had phantom gallbladder pains when I ate high-fat foods before going vegan? How long did it take me to walk normally after a badly sprained ankle or regain proper use of my hand after a softball injury? Those acute pains were surprises to our everyday experience and likewise easier to accept when they ended because we expected them to end in a timely manner. With chronic pain, we've grown into acceptance that we may never find relief, or if we do, it will be short-lived. We had to accept the situation to survive it, so how do we accept it when it's changed?
The Power of Mindfulness and Journaling
This is where journaling and reflection can help build our mindfulness and our ability to see the reality of our situation. Using a chronic health journal like the GRG "Journal for Tracking Chronic Pain & Other Weird Sh*T Your Body Does!" can help us to see the patterns not only of our symptoms and flare-ups but also of well-being and healing. Using colored markers, stickers, and other fun decorations to mark those moments of feeling good can have a stacking effect. Sure, we all want to use these tools to help explain our pains to our doctors and maybe even loved ones, but we should also see the potential to share with our future selves! When I look back at my journals from last year when I first started to experience benefits from Rhodiola and Holy Basil, it was like being pulled out of a rip current onto the shore. Since then, I feel like I've been laying on the beach staring up at the sky wondering how I got there.
Embracing the New You
How long will it take for me to fully accept that my level of pain is no longer preventing me from many activities? When will I take on things I'm nervous will cause pain, like riding a bike? No, literally, I haven't gotten on a bike in over four years because of H.S. on my bottom. I don't have the answer, but I have the mindfulness to know that the time will come. I need to continue to reflect on the past experiences and move forward with the knowledge that even though I may not be in sync mentally with my physical body, eventually I will be, and there will be another "New Me" to learn to be.
Have you ever experienced a disconnect between your physical healing and mental perception? Share your story in the comments or on social media using #PainDysmorphiaJourney. Let's start a conversation about this often-overlooked aspect of healing!