I tried to express a little of what my body feels sometimes in this drawing. It's not always like this — either the intensity or the precise flavour — but it gives you an idea. Like this piece, the drawing was just a snapshot in time. Pain never stays the same; it is always changing. This is one of the things I've learnt and that I find somehow reassuring; nothing is for ever after all. There is reassurance in that.
Most of my pain is felt or begins as a sensation in my abdomen. Following my own observations plus the investigations of a series of doctors, it seems that this is related to an imbalance of gut bacteria and some infections and weaknesses of that gut. Pain is sometimes caused by an excess buildup of gas in the gut — trapped there by who knows what — or sometimes just a phantom pain all of its own. Figuring out the precise pieces and tessellation of this cause-and-effect puzzle is frustratingly hard to do, and I gave up any hope of real answers a couple of years ago.
If it’s caused by something I ate, or if I’m experiencing some kind of flare that that moment, then I experience that as a sort of torture from the inside. The slow passage of food through my intestines is accompanied by an intense sharp pain, as if a ball wrapped in razor blades is attempting to pass through my digestive tract. Everything is inflamed, raw and highly sensitive to every single inch traversed.
That pain sometimes becomes a whole-body feeling. It'll often reach this point if I've been ignoring it — trying to push through whatever work or exertion I'm currently trying to do. The signal becomes amplified beyond the origin point (the abdomen) and booms out from throughout my body. It becomes unavoidable.
There are some second-order pains that I experience. After several hours of intense pain, I can sometimes feel a kind of tiredness or exhaustion. This is a kind of mental lack of energy. I sometimes get headaches. I sometimes find that the pain saps the energy that allow me to sustain or find my natural (or, at least, in the past it was natural / default position) default mood.
Sometimes the pain will be so strong that I have to lie down, curled up in a ball. This is my not-so-subtle invitation to spend some time with it. Sometimes I can ignore it a little but keep it in mind so that it doesn't become bigger. Sometimes it'll be directly related to what I just ate. Sometimes it appears out of nowhere. I fairly long ago abandoned the need always to find a reason for the pain's appearance each time.
Most of this is just telling stories, making up a narrative that may or may not relate to reality. And the thing with stories, I came to realise, is that they can change the pain as well. Sometimes for the better, often for the worse.
The pain is constantly changing. Never the same. There is almost always some level of pain on a day-to-day basis. There are periods of acute pain flares. This is when I need to cancel everything, give in to whatever experience my body wishes me to have. They can be predicted to a certain extent — certain things, were I to eat them, would certainly provoke such an acute episode — but sometimes come out of nowhere. This unpredictability is what makes it difficult to live or plan with any kind of medium-long term plans.
For the most part this pain I experience does not conjure up any kind of fear. These are pains I know. They are almost a kind of friendly presence by now. Old pain becomes part of the furniture. It is new pain, new sensations in new places or in new configurations, that can sometimes provoke fear. The more time that passes, the more I realise that these are all variations on a theme. They are all sensation, unpleasant sensation to be sure, albeit with something dysfunctional about the messages they send.
After a while, you start to get good at feeling the sensations in your body. Sometimes your body literally stops you in your tracks and you have to go lie down. Distraction makes things worse. You just have to be with the unpleasant thing that is happening. The pain, the uncomfortable sensations, the sense of powerlessness and the things you are unable to do. It’s useful to try not to overdo things on a particular day, or part of the day. You can push yourself, but then you won't have anything left over for the next day or for the evening. If you push yourself too hard, maybe you push yourself into pain. All the observation is a critical part of ensuring things stay manageable, within the limits of what is manageable and controllable.
You get to know certain sensations, or certain patterns of sensations. Some of them become familiar, and thus seem less threatening even if they are painful. You start to discount those sensations; they become more of the background. They become your new baseline. You aren't well, you don't feel well, you lack your full energy and aren't living as you fully could, but you just accept everything. You stop asking for help, stop going to doctors, stop considering the situation unacceptable. You accept it. Sometimes this is useful, other times not. I've found myself in that place at several points. Sometimes it's just a break, it's a space in between treatments, or its a place where you find yourself needing to pull back from engaging with the world, to pull back from hope — the hope that there is a straightforward medical answer, that the medical system can and will solve your problem.
The consequences of this ongoing pain experience are manifold and interact in complex ways. Frustration and grief are both good words to encompass these various responses.
To start with, a high tolerance for pain makes doctoring hard. After months of pain, you adopt to that pain as your new baseline. After doctors prove their ineffectiveness, you stop going to them because you know that the tools in their kit aren't able to address the root cause of what's going on.
The more the pain continues, the more I lose my trust in my own ability to interpret my own pain. In the beginning, pain seemed to mean something ("something is wrong! pay attention! fix me!”) but now after so many months of signal, of this alarm bell ringing, I have lost trust in the meaning it is trying to impart. It has become the new normal. I am more used to ignoring it, to being with it and not reacting to it, so it somehow fades into the shadows of normality.
Chronic pain is not just about the pain, as I stated above. It's also about the second-order effects, the loss of energy and of mental clarity. In periods of acute pain, or even just as a general pattern, I find that I am unable to go as fast as my mind wants me to go. I’m certainly not able to take on or handle the things that I recall being comfortable doing in the past, a few years earlier.
When I read in a book last year that fourteen percent of cases of chronic pain lead to suicide attempts, I could see and feel how that could be the case. I feel lucky that my pain ebbs and flows somewhat, but I’d be lying if I didn’t admit that the thought hadn’t passed through my mind at my worst moments.
Hospital visits mean lost work hours as well as a steady mounting influx of bills to pay.
The dietary restrictions that I've found myself adopting mean that eating out, or eating with anyone else, is more or less impossible. This narrows my social circle, already somewhat narrow to begin with. Spontaneous decisions to stay out in town, to get food as a takeaway or to attend things like conferences or work trips require intense planning and forethought. Everything needs planning and consideration ahead of time.
Then there's what it does to my mind: chronic pain can turn even the nicest person into a far shittier version of themselves.
The loss of control and freedom to choose my life's path and options is a frustration.
In periods of acute pain or when my energy is too low to participate in life in any kind of active manner, this is when I have the feeling that life is moving on around me. I am missing. I am still on this planet, joining everyone in this journey around the sun, but it is as if I am absent.
There is also an occasional anxiety and the desire to push the pain away. This is usually short-lived since it is not a useful way of relating to the pain, but it does occur and is not pleasant as a sensation.
There are some other consequences of the pain that are somehow less obvious.
I am more isolated and disconnected than ever. There is simply no way to convey the day-to-day experience — nor the energy or even the inclination — to anyone apart from a very small core circle of people. This means I can't really share the experience with anyone when I meet them or talk or interact with them, since to do so would require too much background explanation and context. So I just don't bring it up. You feel pretty alone pretty quickly when this is what's going on.
In the beginning, or in occasional moments where I've agreed to do something or other, you feel like you're getting a reputation for being flaky and cancelling appointments and or commitments. I recently had to go back through my calendar to find something from a few years back and I was struck by how many events, appointments and work commitments I'd had to cancel or pull out of at the last minute because my body wasn't up to it. Not only do other people find this inconvenient and wearing after a while, but you lose a sense in your own ability to stick to things and/or commitments after a while doing this.
Another consequence of being ill in any kind of not-so-easy-to-explain way is that you have to suffer through and tolerate other people's armchair diagnoses and well-intentioned-but-wearing interventions into your health. Everyone has an opinion. After a while you learn not to share things with people since you can't face explaining the whole story and then you can't face their explanations of what they think is going on, their presumptions to know your body better than you do, and their questions — as if you haven't already thought everything through a thousand times as to what might be going on.
If you don’t have a single-word medical diagnosis your pain is not taken seriously by others. If doctors haven’t found something that’s wrong, then that somehow means — though people rarely say this out loud — that there is nothing wrong with you. To have a chronic pain condition is to suffer through the shaming, doubting and negation of what you feel by others.
My interactions with the medical system have been instructive, if only in a negative sense. In the UK, where I began some of my investigations into this pain, most doctors simply don't have the time to listen to the whole story, to really delve into the details of what is going on. My general practitioner doesn't even take face-to-face appointments as the first point of call; you first get screened with a five-minute phone call. Then if your condition is deemed serious enough, you get an appointment to see the doctor which is limited to 10-15 minutes.
The body is a system. The medical structures as they currently exist doesn't treat that system, however. They treat individual parts of that system. It has developed a pretty good sense of acute conditions and things going wrong — if you get shot, stabbed, have a heart attack or a serious allergic reaction, you’re in good hands. These are all things that the medical system does pretty well at fixing. You’d do well to go to a doctor or a hospital to deal with those things.
What it is less good at is fixing or addressing systemic conditions that have multiple causes, or that are caused by complex interactions between different systems and groups of causes. Most kinds of chronic pain conditions — characterised as something ongoing and recurring for a lengthy period of time, sometimes even absent any clear or specific stimulus — are these kinds of complex problems.
I saw my GP, received referrals to various specialists. I was referred for followup tests. All the different parts to this universe of treatments were characterised by two- to four-month waiting lists. In between treatments there was no followup. The system wasn't configured to link all the parts together. Once one specialist ruled something out, I'd get sent back to square one with my GP.
Eventually, the default position for unexplained abdominal pain that reoccurs or exists on some kind of chronic time-scale is a diagnosis of 'irritable bowel syndrome'. As most doctors will willingly describe, this is a diagnosis of exclusion: they haven't been able to find anything that fits into a specific 'bucket' so you end up with 'this is something else but we don't have a word to describe it’. You'll usually receive a lecture on clean eating, perhaps something about gluten or FODMAPs, as well as instructions to try to 'manage stress'. Any further investigations are usually much harder to initiate at this point because the doctor — by putting you in the IBS bucket — has essentially decided that there's nothing left to investigate. At this point you're on your own.
If you have an uncharitable doctor, or if you discuss it with (mostly well-intentioned) family or friends) you'll hear about how it could 'all be in your head'. You'll hear a lot about stress, and how you should 'really try to get a handle on that'. Your doctors will tell you to 'learn to live with it’ (read: ‘we don't know what's going on so we're giving up searching any further’).
When you go see a new doctor, particularly after a few years of a chronic condition, you have to play a delicate balancing act in terms of the quantity and type of information you reveal about your story. Tell too little and the doctor won't understand what's going on and you won't get any kind of solution. Tell too much and your doctor will quickly put you into a hypochondriac bracket in their minds.
Sometimes I'll be in a lot of pain and I'll know — in an acute episode, for example — that this kind of pain will probably dissipate in a day or two but that I need something to get through it for right now. I've tried enough of the pain medications out there by now to know which ones are good for which manifestations of acute intense pain. The problem is that if you go in requesting a certain kind of pain medication — particularly anything of any kind of strength, and especially if it is any kind of opiate — you'll be labelled 'drug-seeking' and you may never get what you came in for.
For non-acute episodes, doctors will ask you to rate the pain on the 1-10 scale. Because of my high tolerance, my instinct is to rate the pain fairly low because it is all — on some level — tolerable (quote unquote). (Just unpick that word ’tolerable’ for a second in your mind). Or even if it is quite intense, I've lived with it long enough that it doesn't necessarily manifest on my face or my body as if there is any kind of intense pain. Just because I'm not crying out, wincing or bent over doesn't mean that there is no pain. In fact, in my worst moments of pain I'm simply unable to get to a doctor or hospital and you'll find me instead in bed or lying on a cool floor waiting for it to pass.
Abby Norman’s fantastic book Ask Me About My Uterus has this section on how you can grow to some kind of uneasy familiarity with pain:
“Bodily agonies that do not end beget a kind of forced intimacy with pain that, not unlike other intense relationships, can eventually bleed into something tedious and almost unremarkable in its enduring presence. Its place in our lives can become ordinary and even, at times, oddly reassuring. The moment that pain owns us is not when it chokes our breath, when it knocks us down, or when it steals our pleasure. Pain becomes our master when we wake up one day and realize we no longer fear it. When we come to regard it as not something separate from us, but something of us. As much as we have labored to resist this in our minds, our bodies acquiesce. Our hearts beat, our cells divide, our nerves—frayed though they may be—fire, and one day we realize that we no longer remember what it feels like to live without pain. What becomes remarkable is not our body’s distress call, but the silence. Really, it’s the silence that we fear, because it does not mean we have been healed. Silence after pain usually marks our body’s inability, or unwillingness, to adapt again, to heal itself, and to persist as we do for an answer, or a reason, for our suffering.”
There is also a kind of shame in this familiarity. The dominant narratives that you’ll hear around illness and healing usually have some kind of ‘struggle to beat adversity / struggle to win’ theme to them. Coming to a familiarity, making peace with pain, or surrender of any kind is somehow socially anathema. That may be the case, but I have been finding something compelling in the feeling of reassurance.
I gave this piece a slightly odd subtitle. ‘A love story’. Amidst all the uncertainty and inability to describe (or understand) what’s going on inside my body, I have grown much closer to all the myriad sensations and energies happening from moment to moment.
The experience — an extended period of illness and suffering in general, chronic pain in specific — has taught me a lot along the way. I’m far less disconnected from the everyday somatic experience of my body than I’ve maybe ever been in my life. I’ve learned all sorts of things about stress, trauma, the mind-body connection as well as ways of coming to terms with it all. I’ve learned that the treatment of chronic conditions by the normal healthcare system is truly broken. I’ve learned that placebos are a real and sometimes beautiful thing.
I’ve been continually surprised at the body and mind’s ability to adapt to a new normal. Shifting baselines are both a blessing and a curse, but the way I’m constantly calibrating and coping in response to changing circumstances is a marvel to observe.
Amidst this wreckage of what I once thought ‘normal’, there are things that help from time to time. Protective and defensive measures seem to work the best. Awareness and mindfulness help prevent small irks and aches from growing when I try to ‘just push through’. Following a restricted dietary regimen can sometimes help, but not when I’m so far gone that my body reacts even to the good stuff. Stress and time management is almost a truism, but it’s achieved that status for a reason. Sleep is possibly at the top of my list of things that make me feel better; it’s also the first thing I’ll start neglecting the moment I start to feel better. Slow kinds of movement, be it walking or yoga, have been useful in reconnecting me to some kind of energy and reminding me that there is some life or presence in me yet. Acceptance and a reminder about death (not getting too attached to my body and the world) is a surprisingly handy mental model to have when going through the worst moments; in the end, everything passes.
When pain shows up all guns blazing, that’s who’s in control. For someone who generally has a sense of how they’d like things to unfold, this powerlessness took a long time to come to terms with. But there’s some sort of relief in the surrender, even if that’s also somehow layered alongside shame. And since we’re quite far down the road of dealing in metaphor and story by now, maybe it’s just a question of taking care of this scraggly keukegen beast for as long as it takes. One day perhaps I’ll wake up and it’ll have decided to move on to take up residence in someone else’s back yard.
Pain is a profound teacher. If only the experience weren’t so unreasonably unpleasant.