Chronic pain & my brain
I can’t tell you why I’m so certain the experience of chronic pain is so different from transient pain. It’s just one of those things that I have learnt through exposure. Once again, I am not referring to the ways in which the experience is psychologically different. I mean the ways in which the sensations of pain change over time. Maybe I am only speaking about endometriosis and pelvic pain; but I’ve spoken with people with chronic back pain and nerve pain who understand me, so I’m inclined to believe it’s the chronicness that makes the difference.
What I mean is that back when I just got “period pain” as something that came on shortly after I started bleeding, and it lasted usually no more than the first two days of my menstrual cycle, I remember it, it was unmistakable. Uniform. Sure, there were levels of pain, and the way it affected me varied depending on the level of pain; a true use for “on a scale from one to ten”; and there were other factors that affected how well I coped with it, from whether I was wearing tight pants, to whether I was in a stressful situation or a good mood.
Back then I knew that if I could take ibuprofen when it first started, I’d be fine, and if I had a bad episode, at most it would last an hour maybe two, and at worst it would be two days of on-off cramps that would come on and then be manageable with ibuprofen, heat packs or just going for a little bit of exercise.
The fact that none of those things reliably manage my pain anymore isn’t the difference.
It took such a long, long time to even be able to get my head around this and understand that there was a difference, because as I said in my Pain Palette post, the world tells you you’re not allowed to think about your pain, or you’re doing it wrong; bad pain patient, bad! And because of the world of denial and cognitive dissonance I was forced into after years of medical professionals telling me that my experiences were “normal”.
Add to that, the brain fog, direct from the condition itself, and the cost to my critical thinking skills that came from the deeply dysfunctional state that my mental health got to in the worst parts of my diagnostic-and-treatment-seeking years as my condition progressed. There is something profound about the way chronic pain and anxiety and depression form a complex positive feedback loop, compounding the effects of one another, and how completely disabling that is, both physically and mentally.
I’m now writing this “out the other side” that, not to say that my mental health has returned to its once robust and nearly “bulletproof” state, as it was pre-chronic pain, medical gaslighting and trauma, but I’m back to a place where I can actually function, and it’s only now that I am able to actually conceptualise and put into words the way that my brain has been affected by this journey.
From someone who would engage in literally every debate I came across on facebook, in part because activism and standing up for my values, but also just because it used to be fun and rewarding to me, and not devastatingly exhausting, to someone who literally couldn’t follow and comprehend new TV shows, read more than a paragraph, or explain myself and my experiences to even a superficial extent.
I can’t tell you how frustrating and traumatic it has been to lose every single characteristic of myself that I valued—my interminable happiness, positive attitude and outlook (not to be confused with positivity culture; I embraced all my emotions and acknowledged things that were fucked up, I just had really good mental health and would always bounce back from the bad things to fight another day); my body confidence and internalised body positivity (it gets really hard to love your body when it hurts you this much and you feel like there’s no one else to blame but your bod itself; and the same goes when it stops being able to do the things you like doing); my sexuality and confidence with sex (I’m going to write a whole thing about this because there is so much to say about losing your sex drive because of pain and medical trauma); my excitement for knowledge, learning, thinking and interrogating ideas; my ability to always express myself clearly and communicate complex issues; my physical ability and innate motivation and drive for self improvement (physical, mental and intellectual); my ability to make friends easily enjoy all social situations, and my excited and friendly nature when talking with new people….
I’m sure there is more, but these are all specific things I’ve grieved the loss of, in the last 4-5 years, as my chronic pain has worsened beyond my ability to understand or ignore it. For anyone else who’s grieved these or similar things that you feel are integral to your sense of self and your identity, I will say that the thing that has helped me the most is to really understand that if they left, then they can come back. Those things have changed, they can change again, and the changes can be positive.
I didn’t want to accept those things leaving me, and I didn’t want to work to get them back, because I felt like my value was tied to me possessing those characteristics innately—even though all of those things are characteristics that I had chosen to embrace and intentionally cultivated; even though I understand that many of those things are the products of my environment, not inevitable pieces of me handed down from on high—I felt that having time without having or being able to access those characteristics meant that they weren’t truly “mine”, that I didn’t own them, they didn’t belong to me, that I didn’t deserve to get them back.
But I’m learning how to find them again, and I’m learning how to have patience with myself when I don’t have access to them. Which, frankly, is actually the culmination of what many of those characteristics lead me to do “innately” before all of this happened—my good mental health wasn’t from ignoring bad things or from not having bad things happen to me, it was from allowing myself to process my experiences. It just so happened that over a decade’s worth of increasing pain, gaslighting doctors, gaslighting social environments and traumatic medical experiences, which all amplified at an exponential rate over the last 5 years all at once caused a sort of reverse bottleneck effect and my ability to cope with what the world was throwing at me was overwhelmed.
So, in this post I originally set out to tell you how chronic pain is different as a set of physical sensations and experiences, and not about how those things affect you mentally and psychologically, but frankly I’m not mad at where this flow of consciousness has taken me.
The point of all of this was to elaborate on some distinctions I’m coming to understand about my physical experience of pain, but instead the point I’ve made so far is that I have spent years where I wouldn’t have been able to explain these things at all because the effect of the pain and the social and medical invalidation of the pain is such that it creates a monumental barrier to being able to think straight long enough to understand it at all, let alone put it into comprehensible terms; and that's after overcoming the barrier of allowing yourself to think about these things.
And that’s without even touching on the experience of retraumatising yourself by trying to think about these things when the world—both social and medical—offers no support (or worse); whilst writing this I’ve felt the tightness in my chest and the sting in my eyes, but it’s a testament to how much my mental health is improving recently (or perhaps just that I’m having a good mental health day) that I can write this out at all without being overwhelmed by it.
Six months ago, I wouldn’t have been able to do this. I wouldn’t have been able to do something much less intense than this. Six months ago, I believed that my spirit was dead, that all the things I value in myself were gone forever and that I would never be that person again, because that person didn’t have constant pain and all of this trauma. But here I am, still surprised to have survived it.
So, I guess I’ll leave you with the original purpose of this post; talking about how my pain is different. I’ve already touched on this in my Pain Palette post and in the blog describing pain in terms of heat and humidity, but I guess I wanted to try to explain why I need to create those things to try to give substance to my experiences.
So, as I was saying at the start of this post, it was a while before I identified that my pain was no longer just “period pain on a scale of one to ten”, because a lot of the experiences are things like “I feel anxious and agitated and I’m being short tempered with my loved ones! Why?!” and then realising that I could feel (sense?) a pain flare coming on, but when I send my conscious observations to my abdomen I can’t find anything one would traditionally label as “pain”. It’s a very strange experience and it makes you really question yourself and your reality, particularly when this is occurring regularly, to be experiencing the effects of being in pain, but to not actually be able to identify or locate any pain. This is just one of many experiences that I’ve come to be able to put into words, and in doing so, find relief from that sense of confusion and feeling of invalidation and imposter syndrome.
It’s like, once pain had a single identity, but now there are so many different versions, and some of them are so, so sneaky that they will try to convince you they aren’t really pain, and when you’re constantly surrounded by friends, family, doctors and a society that discredits and gaslights your experiences of pain, you start to believe them.
And, to tie all of this back together and pretend like my writing is cohesive; the danger of this is that when you believe that pain identity that says “I’m not pain” or “this isn’t bad pain” then you internalise the responses you’re having to it, and instead of being able to see “Oh! The reason I start getting impatient with my wonderful and ever compassionate partner in these circumstances is because I am in pain and I have a need (to find a safe place for while I am in pain) that isn’t being met right now, and that is making me anxious and short tempered!” you will think “Why am I like this? Why do I keep getting impatient with my partner? Why do I hate social experiences? I used to be so sociable and now I hate being around people. I hate myself for hating being around people!”. (Incase the overly-specific nature doesn’t give it away, this example is based on a real experience of mine).
It has been such a long road for me to be able to start to understand these experiences, and frankly I’ve had to work all this shit out for myself. But doing this work for myself has been the only thing that’s helped me to start feeling like myself again (even if only by degrees).
Writing helps me to understand this stuff and be able to think about it better myself, and I really hope that it might also help other people out there. What I’ve spoken about in this post is some of the absolute worst, roughest, hardest, most fucked up shit I’ve had to deal with in my life, and if this can help someone else get out of that place a little quicker, or at least show them that there is a light at the end of the tunnel, then that in itself is reason enough to have written this.
Cover photo image is a stylised picture of Evie's upper torso, stretching to one side, image created by Emily Loe; check out instagram.com/yellowjumperdesigns for more of her art.