Listening to Pain
The past few years, my life has been taken over by pain. I can't work, keep up with basic housework, life tasks or even cook enough food to properly feed myself. It forces me to be still and to think about why this is my life. It is requiring me to listen to what I've always ignored. I find the pain and fatigue to be extremely difficult to talk about, and that feeling heard is a truly rare, but wonderful, experience. Pain has an isolating effect even when I manage to make it to see good friends in person. Starting this blog is my way of trying to connect to the world again. A form of therapy for me, but my greater hope is that some of the knowledge I’ve amassed in my search for health will find its way to people who can put it to good use in their own lives.
Chronic pain is a complex beast. I still can't say I fully understand it. This interesting, well-cited article goes in depth on the subject and is a highly recommended read. In essence, when pain is present for over 3 months (some say 6) it is no longer considered the pain of the original injury. Secondary ailments like depression and anxiety are brought on by the stress of pain and make the experience of pain itself harder to bear. But more than this, chronic sustained pain CHANGES THE STRUCTURE OF YOUR BRAIN. As those pain neural pathways get carved more and more deeply, pain becomes a quicker and easier response to stimuli. You feel more pain, more often, and it lasts longer and longer. There isn't a reliable or straightforward method to stop this cycle.
Chronic physical pain started for me when I was an 8 year old having headaches. It was my first experience of doctors not being able to help and in the process I underwent extensive, scary (and, surely, expensive!) testing. Then, when I was twelve I "retired" from an intensive but fulfilling ballet regimen due to an issue with my left knee. Neither of these problems were fully resolved. Prescription glasses and physical therapy only helped so much. When surgery with an uncertain prognosis was the next and only option given, I chose an option from the secret menu, and simply didn't talk about the pain anymore. I'd write out and detail my growing list of symptoms to new doctors hoping for a Dr. House-moment-of-insight, but otherwise I'd keep it to myself, and often even from myself. If medical science couldn’t comprehend my problem, maybe it wasn’t even real, perhaps I had made it up. In that case, I needed to learn to ignore the part of myself that was telling me something was wrong.
Pain is now understood to be both emotional and physical, the two being so intertwined that they aren't truly separate categories. But even growing up in the 80's and 90's in the progressive Bay Area, emotional pain was seen as frivolous, generally in the way of more important things, and therefore at times outright dangerous, certainly best ignored. Physical pain was ok to talk about, that was something that could be 'confirmed' by an authority who might also be able to help. I recall being confused by the taunting adage "Sticks and stones may break your bones, but names can never hurt you," because names could and did (and still do) hurt me. Emotional wounding felt so similar to the sting that results from being hit physically! But I duly noted this wisdom of the sages and assigned emotional pain to the category of imaginary things.
Although my parents and teachers prized and encouraged the gentle aspects of my sensitivity: that I listened and absorbed before acting, innately understood the emotions of others and how to support them, I was empathetic and nurturing with plants and animals, my sense of color was intricate and trustworthy; they didn’t, couldn’t, know what to do with my strong reactions and big emotions. The feedback I received was that I was 'being too sensitive,' that I needed to learn to have thicker skin. Like many HSPs (Highly Sensitive People), I found ways to compensate for my inability to grow an impermeable epidermis: I became hyper-vigilant (a preventative measure), could easily dissociate from intense situations, learned to quietly pick out the onions from my food, and I never showed my emotions unfiltered. For the empath part of myself that took on everyone else's discomfort and pain, keeping the people around me comfortable was self-preservation. Suppressing my own emotions, pain and even personality quirks kept another viscous cycle at bay; a cycle where my having a strange response caused by overstimulation could cause someone else discomfort, which I would then feel and take on in addition to already being overwhelmed. A cycle which taught me how to act 'normal.'
It seems I succeeded at appearing fairly normal, thriving even. I honestly assumed my pain and discomfort was the same as everyone else’s, just that it wasn’t something we shared with the world. I desperately needed it to be normal; one can only be so weird before alienating even the most tolerant support system and it felt like I was always on the verge of overflowing that threshold... And it is true that everyone has pain that they don’t expose to the world. Just as we wear physical clothing to hide our bodies, we wear metaphorical masks to hide our inner lives. But we all do this to different degrees and in such different ways. Tuning into the #invisibleillness community has shown me how severely one can be suffering without displaying any visible outward signs.
This seems like a good place to present my own personal evidence (and to remind myself) that sensitive does not mean weak and that people who suffer from illnesses that you cannot see are not lazy or malingering. What follows is a list of my earlier symptoms that didn’t knock me down or give me pause about my health. I do not list these symptoms to complain or to compare my pain to yours. Perhaps this can serve as a reminder of the pain one can commonly be experiencing while living a full life and appearing to be fine.
1. Pushing through chronic migraines and severe panic attacks, I served my college community as student Vice President and graduated with honors.
2. I walked (at the pace of a brisk jog) 5 miles a day in dress shoes around Manhattan for years with plantar fascitis, hammer toes, bunions and a never ending series of blisters. It was not an out of the ordinary experience to realize I was bleeding only upon finally scoring a seat on the subway, but definitely a disturbing moment when another passenger has to point it out to you.
3. When during a routine exam breast lumps* were found, they took biopsies without warning what was involved (for those of you who haven't had the occasion, think a shallow, slow motion, grinding stab to the chest with a sharp metal straw). Afterward, I got bandaged, dressed and went straight back to work that day as planned. Terrified and shaken as I was, it didn’t occur to me to share this trauma with anyone at the time. I protectively assumed that the experience was routine and not worth mentioning. (*Quite thankfully, test results came back benign.)
4. Obvious symptoms of SIBO and IBS festered for 25 years before a doctor told me they might be able to help.
5. As many women do, which is all the more reason it should not be overlooked, for a few days of every month since I was 11, it was routine to smile through brutal pelvic pain and a private horror-show in the bathroom, never pausing to think that one might need extra care and rest at such a time.
This incomplete list of symptoms were of course on top of the chronic pain cycle that began swirling for me at age 8. I'm simultaneously proud of myself for pushing though the pain and grief-stricken by the self-abuse and neglect this indicates.
A highly sensitive person is, by definition, easily overstimulated. What is neutral or pleasant to most can be, comparatively, an absolute assault to our senses. Pain and overstimulation often go hand in hand. My favorite illustration of this is our neighbor joyfully riding by, backfiring on his Harley Davidson, the resulting sound waves hitting me, as I exit my parked car, like an actual punch to the gut. I'm thrown back, the wind knocked out of me, but smile and nod a neighborly greeting in return. In trained or unskillful ways, we fight our battles every day with incredible resiliency. We are Badass (©️ Amber Rochelle) warriors.
The symptom that finally got my attention were the tears that began shooting out of my eyes daily, seemingly unprompted. I’d never been a crier before. Those drops of saline had never gotten past my mask without permission. Subsequent therapy and tiny doses of medication helped me begin to notice and tend to my emotional and physical needs. I changed my attitude and my job repeatedly, each iteration closer to my true self and more appropriate to her new set of requirements. Throughout all of this, I’ve been lucky to continually find work that I’m passionate about. As my needs became more apparent, the work that I considered became more and more fulfilling. I went from an exciting gallery management position to, eventually, leading my own collaborative projects with people and communities with whom I resonate. But, at the same rate that I was regaining awareness, chronic fatigue and pain set in, imperceptively slowly over the next 8 years. Able to work less and less no matter how inspiring and fitting the work was, I still figured I was clumsy, lazy, ungrateful and overreacting. Down to only a couple afternoons of work per week, I woke up one morning at 34 years old, unable to get out of bed due to a sudden onset of excruciating pain in my hips. I finally put together that something systemic was happening.
I required doctors finally take me and my list of ailments seriously. I saw all the specialists, we ran all the invasive tests. The lack of results caused both relief and despair. We ran thoroughly down and through the rabbit holes of false positives more than a few times. Almost every medication we tried my body regected violently.
Ultimately doctors were only able to give me a list of probable diagnoses that they were unable to treat (ME/CFS, RA, IBS, Fibromyalgia); Western medicine signaling that it had run out of ideas. Even the most empathetic doctors were frustrated, osscilating between frustration with their lack of ability to help and with me, implying for the protection of their identities as healers that I was making it all up.
Pain, in our culture, causes isolation when what it is asking for is to be nurtured. We instictively run from unpleasant experiences. We can’t bear for our loved ones to be in pain. Because it cannot be seen and the experience varies so greatly from person to person, pain is exceedingly difficult to relate to. Denial is easily slipped into; we wish so hard that it isn’t as bad as they say it is, we are terrified that, if true, then it could happen to us too. For the person experiencing it, pain can be all-encompassing, there is nothing more real and palpable. Yet dishearteningly, pain is invisible to nearly everyone outside your body that you try to show it to, especially if you cannot easily point to a cause. Trying to connect with people about what's going on with me is a huge commitment of energy that I don't often have to spare. I fear the rejection of my reality which has become so distant from what is expected. I'm learning how to be honest without having to explain too much, to rely less on feeling understood.
What has helped have been subtle therapies that require me to listen extremely closely to my body. Drastic changes to my diet, gentle body work, medicinal herbs, ayurvedic therapies, meditation. My isolation from the world has made the little contact I have count. I have built a support team of family, friends and therapists who listen to and believe in my pain and experiences. I'm being honestly seen and fully respected for the first time. Being heard is by far the greatest medicine I have found thus far in my search.
Today pain is still ever-present. However, last month, I saw a few pain-free moments that gave me a glimmer of hope. On a daily basis, my hip and abdomen hurt the most, this pain is present almost all the time and varies from dull ache to piercing and sharp. My back, neck and shoulders ache about 75% of the time. Pain in all my other joints comes and goes. Usually one or more acts up daily and needs to be supported and/or immobilized if possible to allow inflammation to heal. Extra stressors like grocery shopping or eating the wrong food cause waves of nausea and blinding headaches.
I hope to fill this blog with more than just my personal story, but first I need to let it be heard. Writing this, my body reminded me (in the form of severe menstrual cramps, and a tick bite that ushered in two weeks of migraine and nausea waves) of the importance of checking in, taking breaks and not getting swept up entirely in inspiration. This will have to be done like everything else, slowly, carefully, and as I can.
(thanks for listening)