---
title: "On pain and subjectivity"
layout: post
image: 
    feature: pain.png
---
Pain is a great topic for philosophers. Wittgenstein uses the example of "owning" pain ("I cannot have your pains") in his _Philosophical Investigations_. Susan Sontag famously wrote about photographs of atrocities in _Regarding the Pain of Others_.

It would be highly presumptuous for me to think that I could supplement the thought of such eminent thinkers -- and I do not here claim to do so. However, extreme pain is a feature of my every-day existence at present. So this, really, is a personal narcissistic essay. written for nobody but myself and the unfortunates who stumble across it by mistake, via a search engine or AI, in years to come. For those who don't know: I have rheumatoid arthritis, which is treated with powerful immunosuppressants. This immunocompromise allowed a virus called BK virus to take hold in my body, which has now destroyed my kidneys. This so-called BK virus nephropathy is incredibly rare in a non-transplanted (native) kidney, with approximately 60 cases worldwide, total, ever. To try to fight this virus, I had to come off my rheumatoid arthritis medications.

It is hard to describe the level of pain that the untreated rheumatoid arthritis induces, despite my rheumatology doctor stating, just last week, that I have a remarkably high pain tolerance. The primary inflammation at the moment is in my neck and shoulders. This means that the spinal cord is compressed by the inflammation. In turn, this triggers all sorts of pain -- most specifically it trips a terrible headache just above the eyes (this is called a "cervicogenic headache" and it's hugely debilitating). This pain is so bad as to make me throw up and feel constantly nauseated. It is a terrible state in which to exist where, every morning, I wake up with dread, knowing how I will feel.

One of the questions that rheumatologists ask is: "on a scale of 1-10, where 10 is the worst pain you can imagine, where do you put your pain level?" I always find this a hard one to answer. Is pain always comparable in this way? And what is your pain preference? I've broken my foot before. It hurt. But it hurt a lot less than (and _differently_ to) the every-day, all-day pain I have now. I'd far rather break my foot once per week than have this rheumatoid pain. On the other hand, being castrated is probably the worst pain experience I can imagine. I might take the rheumatoid arthritis over that. But does everyone who uses this "pain scale" contextualise in this way? Maybe some people don't and thus "over-estimate" their pain compared to others? This could be the case, but it's not really the point. I have taken the pain scale to actually be a "coping" scale. If someone is saying they feel their pain levels are at the upper end of the scale, it doesn't matter with what they are making the comparison -- it shows that they are not coping and require an intervention.

There's also, I think, a substantial difference between ongoing, chronic pain and acute pain. Hence, my "broken foot" analogy isn't quite sound. These one-time pain incidents are understandable. Your body makes you hurt so you know that you have damaged your foot. You know that, once healed, this pain should subside. With rheumatoid arthritis, untreated, you wake up every day and life is a whirlwind of pain with no cause that you can address. It presents itself as meaningless suffering; as pain without a cause. When you have broken your foot and you ask "why does it hurt?" the answer is obvious. With my chronic pain, the answer is: because, without treatment, it will always be like this, because your body, your immune system, or, in fact, _you_, are the force attacking yourself and causing constant damage.

The chronicity of pain results in mental changes. Most people with long-term chronic pain suffer from depression. You might think: that's obvious. If you hurt the whole time, it would be upsetting. But I think it's not quite like that. It's more that the shutdown of depression mirrors the type of protective mental manoeuvres that you subconsciously need to handle constant severe pain. A good example of this is the idea of "body scanning" and "mindfulness". Lots of people think that this type of meditation, where you focus on the here and now and "pay attention to your body", is a good strategy for people in chronic pain. I can't scream "NO NO NO" any louder in response to this. The last thing that people in terrible constant chronic pain want to do is to focus on their body. Instead, the brain institutes, it seems to me, subconscious blocks that precisely _stop_ such attention the whole time. Because otherwise, it would not even be possible to exist day-to-day. I feel that this "blunting" or "blocking" effect can then extend out emotionally, at which point it looks like depression.

The other thing that scares me -- and that would scare most people if they knew -- is how bad pain control/palliative care is and how quickly the ineffective meds stack up. If you feel very sick and are in pain the whole time, there is only a limited amount that can be done. People giggle and say "if I get that bad, I'll just shout 'give me the morphine!'" but I am afraid it doesn't work like that. The painkillers themselves also make you feel sick. The stronger painkillers can knock you out -- if you can stomach them (for which there is no guarantee) -- but this is only of use if you are at the stage where you want to spend what remains of your life unconscious. I have had, recently: tramadol, codeine, paracetamol, buprenorphine, morphine, and oxycodone. Then, to stop me being sick from these drugs (and from the pain itself), I have had ondansetron, cyclizine, metaclopromide, and domperidone (sounds like a champagne). These drugs all cause severe bowel dysmotility, so there's also extra drugs to handle that side effect. The pain relief helps. But it doesn't help enough.

Pain is also a dominating subjective experience. Conversations in our house do range across a wide variety of subjects, but pain is often at their centre. It is hard to think of more to say that isn't about pain levels and locations, when this is your overall most prominent experience. It also affects not only these waking moments of sociability, but the hours when I used to sleep. These nights, I am lucky to snatch a few hours of sleep, in between lying conscious in pain. I awake, often, feeling more tired than when I lay down, 8 hours earlier.

Despite its phenomenological dominance, it can be difficult to talk to friends about pain. People do not know what to say. They know it's good to ask. And they know that they shouldn't expect a glib "oh, well, you know, things are fine, I guess". But it makes people deeply uncomfortable to see others in pain -- particularly when they are friends or family. I am inclined, from anecdotal evidence of n=1, to say that it is particularly stressful on partners/spouses. Certainly, it is very difficult for my wife, who lives in a constant state of fear (that I will die) and powerlessness (because she cannot alleviate my suffering).

But to return to the earlier theme: we often want suffering to have meaning. "He died in vain" is among the worst descriptions of a life. The suffering from RA has no meaning, as above, but I had hoped it had a purpose. The idea was to allow my immune system -- the cause of the RA pain -- to reactivate and to destroy the BK virus. However, after 7 months and counting of acute suffering, every day, the virus persists and my kidneys decline (12% function and losing a percentage point every week and a half or so). To suffer so, and still to lose, makes me want to howl. But that's the howl of hindsight. Medicine, more an art than a science, is just about taking decisions in the present based on incomplete evidence and sometimes theoretical speculation.

Will things get better? Maybe. If we can get the rheumatoid arthritis back under control, using tocilizumab, then this daily pain may subside. However, as my kidneys fail, I will feel more and more unwell and will at some point very soon require dialysis for the rest of my life. (A transplant would be virtually impossible with my conditions and immune system problems.) Which leads me to the conclusion of this self-regarding spiel. Intellectualising about pain is another coping strategy. By writing and thinking about one's own suffering in an abstract and objectifying way, it becomes possible to see beyond the cloak of misery that pain otherwise brings. There is certainly a place for an emotional outlet in response to such pain -- and my tears usually break through when I have reached rock bottom on energy levels -- but there is also space for a consideration of the self from the outside, as I have tried to do here.