Living with chronic pain has been my unwanted companion for 7 years now. What started as occasional discomfort evolved into a constant presence that threatened to break my spirit. But through my treatment on a chronic pain management course and diagnosis of hypermobile Ehlers-Danlos Syndrome, I discovered important aspects of myself that would have otherwise remained hidden beneath the surface of an easier life.
Pain can be a harsh teacher, but it’s definitely a profound one. It’s given me valuable insights about my thought patterns, behaviors, and needs that have helped me not just manage my condition, but live a life I was beginning to think would be impossible.
Here’s what I learned.
1. Unhelpful black and white thinking was my default mode.
I had unknowingly spent my life splitting my experiences into perfect successes or total failures. In my mind, there was no room for the messy middle where most of life actually happens. When I applied this to my chronic pain, it had disastrous effects.
Take the example of the strengthening exercises and mindful movements I was prescribed at my pain course. If I didn’t do the full sequence and reps, I perceived this as a failure. If I was going to do them, I had to do them all. So my solution on days when I was struggling with fatigue? Don’t do any of the exercises.
Learning to recognize my all-or-nothing thought patterns transformed my experience. Once I became aware, I was able to challenge it. Wouldn’t it make more sense to do at least a few of the exercises rather than none at all? These days stopped being failures and became opportunities to practice gentler movement.
This more nuanced thinking extended beyond physical symptoms to recovery itself. Each tiny adaptation or moment of body awareness represented progress, even without dramatic pain reduction. Breaking free from black-and-white thinking hasn’t eliminated my condition, but it has removed the additional suffering that rigid thought patterns had been silently adding to my pain.
2. I had difficulty saying “no” (especially to myself) and rarely asked for help.
The concept of boundaries existed theoretically in my mind but rarely manifested in practice. I was a people pleaser. But the worst part was, it wasn’t even other people pushing against my boundaries; it was me.
When I began to examine the roots of this pattern, disturbing “good girl” beliefs became apparent. My worth seemed contingent on productivity, availability, and compliance. Rest appeared like a selfish waste of time. Asking for help seemed like failure. Messages about “pushing through” and a “strong work ethic” that had been passed down in my family through the generations had become internalized as unquestionable truths.
But the truth was that I needed help. Trying to do it all was literally destroying me. This was extremely tricky for me to work on, but small experiments with saying “no” and asking for support slowly increased my confidence.
I learned that nothing catastrophic happened. People were happy and willing to help, and it got easier to communicate my needs. My self-worth slowly untangled from constant production and availability, creating space for authentic value based on being rather than doing.
3. Perfectionism was fueling my pain cycle.
Endless revisions of work projects and emails. The pursuit of a spotless home environment. My “high standards” manifested in exhausting ways that seemed normal until I was forced to examine them by chronic pain.
I discovered that when I couldn’t perform tasks to my impossibly high expectations, my inner critic grew louder, creating stress that intensified my physical symptoms. Each flare-up triggered disappointment in myself, generating more tension, which created more pain.
Breaking this cycle required confronting my motivations. Why did minor imperfections cause such distress? What was I trying to prove, and to whom? What would actually happen if I let things be “less than”?
I challenged myself to find out, by ignoring the cluster of sock fluff staring me in the face on the carpet. This may sound ridiculous to you (it even sounds ridiculous to me), but sock fluff is my nemesis. I waited out the discomfort for five minutes, then five more, and before I realized it, a few hours had passed. Ok, so I did eventually vacuum up that sock fluff, but I learned that nothing terrible happened when I sat with the discomfort for a while.
And as a result, I’ve started to find freedom from perfectionist standards that had been hurting me long before my physical symptoms began.
4. I couldn’t sit still even when I needed (and wanted) to.
Even after I’d learned to ask for help and say no, I noticed a persistent need to be physically doing something. Things like fidgeting, bouncing my leg, and the perpetual need to be busy seemed to be automatic behaviors. It wasn’t until I learned about the link between hEDS and neurodivergence, such as autism, ADHD, and AuDHD (which run in my family), that I understood why.
Movement seeking, sensory processing differences, and difficulty with proprioception—all common in both hEDS and neurodivergence—affected how I experienced my body in space. My perpetual motion was part of my neurological wiring, but it was harming my ability to rest and relax. Without this downtime, your body’s threat system is permanently dialled up, which research tells us is one of the main factors contributing to chronic pain.
Awareness was the first step, though, and practicing mindfulness has proved really effective for me. Now, when I lie down to relax and find my mind immediately buzzing and my body itching to “do something,” I utilize mindful grounding techniques by noticing the things I can hear, feel, and smell. When my mind drifts, as it does, I simply become aware without judgment and bring it back to my senses.
5. My environment was full of pain triggers I hadn’t noticed.
Given my value-based assumptions around productivity, it’s unsurprising that I spent years ignoring the negative impact of my environment. Harsh overhead lighting triggered migraines. Uncomfortable seating exacerbated joint pain. Background noise provided a low-level but constant distraction. But I pushed them all aside and ploughed on until chronic pain forced them into my awareness. Previously dismissed as “just the way things are,” these elements significantly influenced my pain experience by affecting my nervous system regulation.
Now, I will no longer tolerate an environment that doesn’t suit my needs. I’ve replaced fluorescent lights with softer alternatives and added supportive cushions to chairs. I utilize noise-cancelling headphones for public spaces, bring a portable seat with me to outdoor gatherings, and keep my sunglasses on even when it’s cloudy.
Understanding the relationship between environmental stimuli and nervous system regulation has empowered me to create environments that are conducive to my comfort. I’m not being a diva; I’m honouring my needs. Of course, the pain hasn’t disappeared entirely, but removing unnecessary triggers has reduced its intensity and frequency.
6. Catastrophic thinking amplified my suffering.
Without realizing it, my mind often races to worst-case scenarios with startling speed. And not just in relation to pain, but work, relationships, and other health issues, etc. This type of thinking represents a cognitive distortion and, as I learned at the pain clinic, is yet another factor that dials up our body’s threat detection system, causing perpetual dysregulation.
The thing is, when these thoughts happen internally, you often don’t become aware of them. So now, when I notice myself spiralling, I speak these catastrophic thoughts aloud, which often highlights their irrationality.
Gradually, my nervous system has stopped responding to every little thing as an emergency. It does take work, and I do slip back into old habits. After all, my catastrophic thinking hadn’t developed without reason—it’s a protective mechanism trying to prepare me for the worst. But by acknowledging its presence, I can respond with compassion rather than believing every alarming thought that crosses my mind.
7. I struggle with emotional regulation.
Emotions seem to hit me with tsunami force. Minor irritations trigger disproportionate anger, and sadness plunges me into temporary despair. This has become far more apparent as I’ve gotten older and the demands of life have increased. But what I began to notice is that each emotional wave that crashes through my system has physical consequences—tension, inflammation, and increased pain. And research has shown that people who struggle with emotion regulation are at a greater risk of developing chronic pain in the first place.
Learning to pay attention to my emotions before they escalate is key in reducing both pain flare-ups and my mental well-being, but it’s still something I find very tricky. I discovered that yet another reason for my incessant busyness was to keep uncomfortable feelings at bay, so after years of suppressing them, I have a hard time identifying them before they’ve gotten too big.
I’ve been working on listening to the physical sensations in my body that indicate emotional dysregulation, such as increased heart rate, rapid breathing, or clenched jaws, and taking steps to mitigate them before they escalate. Utilizing deep breathing exercises helps to interrupt the fight-or-flight response before it intensifies, as does respectfully walking away from stressful situations when I realize I no longer have the emotional bandwidth to deal with them.
8. I was stuck in “boom or bust” mode.
Boom or bust is something most people who live with chronic pain will relate to. You’re having a relatively good pain day, so what do you do? Everything! You need to cram it all in whilst you feel good, right? Wrong.
When you push yourself like this, your energy expenditure exceeds sustainable levels. This results in a flare-up of your symptoms, which causes you to crash and be unable to do much of anything. Once recovered, the same overexertion happens again, creating a rollercoaster of productivity and collapse. And as I learned at my pain course, the worst part is that with each flare-up, you never return to the baseline level you had before it. So your chronic pain actually gets worse and worse.
Learning this fundamentally changed my approach to activity, and I have embraced pacing to manage my energy expenditure. I now overrule my all-or-nothing thinking and break tasks into smaller components and rest regularly as I go.
It’s a work in progress, but steadier energy levels and fewer severe pain episodes provide the motivation to keep working at it. Sometimes, the tortoise approach truly does win the race, especially when living with chronic conditions.
Final thoughts…
If you’re struggling with chronic pain, I encourage you to look beyond the physical aspects. While medical care remains essential, exploring your unique psychological patterns and environmental factors might reveal unexpected paths toward relief.
Of course, your journey won’t mirror mine exactly, but the principle remains: understanding yourself more deeply creates opportunities for healing that symptom management and medical intervention alone cannot provide.
