Tag Archives: pain

Healing is not just a personal issue

I caught myself thinking recently ‘oh, it’s just period pain, it doesn’t matter.’ I’m so used to feeling that I have to push through pain – especially if it’s just regular body pain and there’s no threat of taking physical damage by ignoring it. I’m in the habit of thinking that being in pain is something to ignore or minimise and that I should expect to do as much as a person who was not in pain might do. This being an imaginary person who gets a great deal of stuff done all day, every day.

I live in a culture that doesn’t take womb-pain seriously and tends to treat people who suffer with painful periods as though they are just making a fuss. Collectively, we aren’t good at showing compassion and respect for people who are limited by pain or other disabling problems. Resting, pacing and other kinds of gentleness are all too easily treated like laziness. That all creates anxiety.

Pain takes a toll, physically and emotionally. Pushing through it to get stuff done requires a lot of mental effort. That’s a cost I’m not in the habit of thinking about when I just default to slogging on. I’m in a situation at the moment where I can afford to be a bit more gentle with myself around pain. I’m also aware that this is not an option everyone has, and that poverty and insecurity around both work and housing are major factors contributing to people not being able to move gently in response to their own distress. The longer you have to do that for, the more distress it causes and the mental health damage can be huge – and that’s not a pain everyone can afford to take seriously either.

Healing is a social justice issue. We tend to focus on it as an individual issue, but that’s not enough. What scope we have to rest, heal and recover is framed by capitalism, by poverty, by unsympathetic workplaces and unaffordable homes. No one should have to choose between trying to recover from pain or illness, and being able to afford to eat.

It should not be normal to have to ignore pain.


Talking about pain

There are two major factors that will impact on how your talking about pain is understood. One of these is who you are considered to be, and the other is whether you fit into expectations of pain communication. This happens in medical settings and also in any other context where talking about pain might be a thing.

Women have a much harder time of it than men getting pain taken seriously. Black women have an appalling hard time of it getting pain taken seriously. If you are perceived as drug seeking, attention seeking or fuss making you won’t get your pain taken seriously – this can often affect people with mental illness and neurodivergence, or anyone else who might be stigmatised. Sexism and racism inform how people interpret expressions of pain. Anyone who experiences prejudice is likely to find that prejudice shows up when they express pain and results in minimising, dismissal and a lack of help.

How you express pain and how that fits with expectations has a big impact on whether you get taken seriously. There are two particular groups I’m aware of that suffer around this. Neurodivergent people don’t express themselves in the same way as neurotypical people. A monotone speaking voice, or not using your vocal chords in the expected way can go against you. People with chronic illness have similar issues – when you live with pain all the time you don’t go around crying and screaming over the things that would make normally pain-free people cry and scream. So you aren’t believed.

I’ve had plenty of first hand experience of saying ‘my whole body hurts’ and being met with disbelief. I can say that calmly, because mostly I communicate calmly. It happened to me while I was giving birth. I expressed my distress in a calm voice and no one took me seriously. I got most of the way to being ready to push with no support or pain relief as a consequence.

If someone is expressing that they are in more pain than they can bear, then how they express that should not be the most important thing. Pain relief is widely available in many forms. There’s nothing weak or immoral about wanting it. The only consideration should be safe dosage. And yet, all too often for too many people, pain is dismissed or ignored. Why on earth would it even make sense to judge a person’s pain on how it compares to pain some imaginary other person might experience? Why should how normal or credible we find someone’s pain expression to be – which is so subjective – be a measure of what help they deserve?

Oh, but some people make a fuss about nothing.

Why does that external judgement carry so much weight against reported suffering? Why does it even matter? Pain relief isn’t a rare thing, it’s not massively expensive. Kindness isn’t a finite commodity. It’s much more important to ask why some people are taken more seriously than others, how privilege informs this, and how we ignore the presence of our own prejudices and assumptions when we downplay someone else saying they are in unbearable pain.


When embodied spirituality isn’t really an option

I’ve always been interested in the idea of honouring nature as it manifests in my own body. I’m also not very good at it, because my body is a bit of a mess. Doing things that focus on being embodied, or conscious of my body isn’t a great deal of fun when I’m in a lot of pain. Getting out there and putting my body in nature is also problematic when it’s cold, or I’m already sore.

Once upon a time there was a person who was ostensibly all about embodied spirituality and felt that the reason I (and no doubt other people) were hurting was that we weren’t embodied enough. If only we’d spend more time being embodied, the pain would naturally reduce! This of course is bullshit, but there’s a lot of it out there and it needs talking about.

If you have the kind of pain that is caused by stress, tension and failure to look after yourself, then paying more attention to your body will probably help fix a lot of those things. These are not the reasons I’m in pain. I’m hypermobile, it’s a tissue issue, it’s about fundamental structural things in my body. Paying attention to it just makes me more aware of it, which improves nothing. Organising my body to minimise damage and pain is not something I have to do consciously most of the time.

This kind of minimising is one of the more common forms of ableism to show up in allegedly spiritual spaces. It depends on the idea that you would be well if you tried a bit harder, and that’s simply not true for everyone. If you can cure your ills with a bit of mindfulness and paying more attention to your breathing, then you simply weren’t that ill to begin with and it is not a fair measure of what anyone else might be up against. 

Not being cured by doing the spiritual things does not make you a failure as a spiritual person. You might find things to help you manage what’s going on – and you might not – but either way there should be no shame in it.

I’d like to be more embodied, but I can’t do that when my body is difficult to inhabit. These are good times to explore the practices that take me away from myself. There’s nothing unnatural about seeking respite from pain – it’s one of the things sleep is for.


Dealing with disbelief

I made the mistake of starting to suffer from chronic fatigue at a point where it wasn’t reliably being diagnosed. My doctor at the time did not believe it existed, and treated me accordingly – with scorn, suggestions that it was all in my head and the assumption that I just wanted to get out of PE. And yes, I did want to get out of PE because PE was hell, for a whole bunch of other reasons no one knew were issues. Whatever else was going on, my distress never seemed plausible to him.

I had no idea, as a small child, that most people weren’t in pain. Other kids did the things I couldn’t do, and seemed to be ok. I’m not sure why I concluded that they were all just making less of a fuss about it, but that’s child brains for you. I certainly had plenty of encouragement to think I was just making a fuss and not trying hard enough.

Now we know how hypermobility impacts on people, what was happening for me is no great mystery. Everything takes me more effort than is typical. Many things cause me pain. I hurt and damage easily. Taking my weight on my hands really hurts me. Also I have a lot of issues with being upside down, I still hate it, I still find it stressful but as an adult I don’t have to deal with people forcing me into those positions.

At this point I’m fairly confident that I don’t express pain – be that physical or emotional – in a way that makes much sense to a lot of people. My default is to explain, but I tend to be calm. This is to do with my coping mechanisms, and being used to pain. It meant I had a lot of trouble persuading anyone I was in labour, and went a long time with no pain relief as a consequence. It may have coloured all of my interactions with the medical profession. There are a number of people in my history I am fairly sure had a problem with it.

I’ve been told I come across as cold, unfeeling, uncaring. I’ve been told I seem manipulative. I guess if you expect people to present pain in more dramatic ways it might be hard to believe a person who is saying calmly that they’re in more pain than they can bear. Panic can make it impossible for me to present this way, but I’m not always panicked. 

Somewhere along the way I missed all the memos about appropriate expression of feelings. What seems normal to other people doesn’t always make much sense to me. I’ve spent a lot of years trying to figure out what it is that gets some people’s distress taken very seriously, and other people ignored. From what I read, I’m fairly sure privilege is a big part of it. The more advantages you have, the more likely you are to be taken seriously about problems you encounter. White men are more likely to get their abdominal pain taken seriously. Black women die in labour in disproportionate numbers. 

How we expect people to behave is clearly informed by all sorts of things. But it isn’t a fair measure. Ignoring distress because it isn’t being presented the way we expect, or assuming a person will overstate because of who they are, is really problematic, and there’s a lot of it out there. Much of it is far worse than anything I’ve had to deal with, but these are the illustrations I have to work with and I hope they are useful.


Staying Alive

CW suicide

I can’t remember when I first had the experience of wanting to die, but I was young. It wasn’t so much an urge to kill myself, more the desire to have never existed. By the time I was 11, I was trying to figure out how to justify my existence day to day. At that point I was fighting to work out how to live, but that’s changed over the years. 

If I could simply stop breathing by choice, then I would. That’s part of my everyday experience. It has to do with living with pain and always being tired and feeling so worn down most of the time that I have no idea how to keep going. There’s also too often nothing much I’m excited about and moving towards that makes me actively feel like I want to live. This is not the same as wanting to commit suicide.

I’ve never actually experienced it as wanting to kill myself. Sometimes what I have is an intense and overwhelming desire to not be in pain anymore – physical or emotional. Sometimes it is a thing that rises up within me and seems intent on killing me – and thus far I’ve managed to fight that, although what it brings up for me is violent, terrifying and close to overwhelming. I don’t know how to describe it except to say that it feels separate from me.

I’ve reached out for help many, many times. As it happens I’ve had years of asking people for things that would give me a better chance of not being in so much distress. What this has taught me is that help mostly isn’t available. On days when I’m struggling with self-harming impulses and the thing in my head that wants to kill me is menacing me, it’s hard to imagine who I could take that to who could actually help me. I’m not an easy person to comfort – this seems to be a brain chemistry issue. I’ve reached out for medical help, and it wasn’t there and I don’t have it in me to keep fighting – be that people or systems. I’ve been fighting myself for a long time. At this point I think I’ve worked out who would be both willing and able to step up in an emergency, but its taken a while.

Sometimes, the only thing I can do is to keep doing something. To put some kind of action between me and my death. To go one breath at a time in trying to figure out what there is to live for and how to keep going. I mostly don’t know how to keep going. But if I’m typing, I’m not doing anything else and there have been times when writing blog posts has got me through.

I did not write this blog today, it is not an urgent issue so no one needs to feel like they have to come and rescue me right now. Part of the point of writing is to try and explain so that other people are better equipped for their own experiences and the suffering of people in their own lives. Part of the point is to flag up that people won’t always tell you when the help they ask for is a matter of life and death for them. It’s not always easy to tell what might get someone through an otherwise impossible day and how much good you can do without knowing it.

And sometimes the answer is to write, because writing isn’t dying. Today (the day when I wrote this), not existing is an attractive idea – more so than it usually is. I can see no way forward, no way of doing anything good enough, no way of making my existence bearable. I’ve been here many times and I know things won’t get better but that I may learn how to make do with less and how to keep moving despite how much it all hurts.


Dealing with pain

Over the years I’ve seen a great deal of advice to the effect that the best way to deal with pain is to show up for it. Be embodied, practice mindfulness. The idea that pain comes from not paying enough attention and that self care starts with showing up can sound persuasive. Except that, like a lot of people who deal with pain, I find it doesn’t work for me.

Recently I ran into this article about pain which has raised some interesting issues for me – https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong

We know that brains form pathways and that the things we do and think habitually give us the easiest pathways for our thoughts to run down. Habits are powerful things, and habitual thought can trap us in really unhelpful relationships with the world.

Pain is no different from anything else we deal with, once its in the central nervous system, it’s all messages and pathways. It makes sense that pain would build habitual pathways in exactly the same ways that anxious thinking can. That in turn would mean that a person who has experienced a lot of pain would be more likely to process a physical experience as painful. Or more painful.

Emotional pain doesn’t exist in some separate system from all of this. Trauma happens inside our bodies. Whatever happens to us, it happens to us as whole systems. Healing from anxiety can depend on not engaging too much with the anxious thoughts and feelings when they arise. What if, sometimes, pain works in much the same way? What if the body can learn pain responses? What if pain is dialed up by long or repeating experiences of pain because we carve it out as a pathway in our brains?

It would mean that for some of us, the best thing to do with pain is to pay it as little attention as possible. It would mean not being mindful, not being too embodied, but keeping all of that out of our thoughts in order not to reinforce the pain pathways.

Pain isn’t one thing that works the same way for all of us. The solutions to it are going to be equally diverse and complicated. I’m so relieved that we’re starting to see research that takes a broader approach to pain and that doesn’t assume that those of us reporting a lot of it are just making a fuss.

If pain is rewiring your body, and changing how you experience pain, then perhaps the best bet is to try not to show up for that.


Nature, pain and the body

Nature, as it manifests in my body, is painful. Compared to many people I get off lightly, because it’s bearable and most of the time doesn’t stop me from doing things. However, I’m massively hyper-mobile, which causes pain, and there are some other things (maybe related, maybe not) that also hurt. If I pay attention to my body, then my primary experience is one of hurting.

This is an issue for me around any meditation that involves my body. Relaxing into my body is something I try every now and then, but cannot get to work. I like meditations that distract my brain and those can lead to some degree of relaxation, whereas engaging directly with my body increases my pain awareness and that can make me more tense and uncomfortable.

Ignoring pain doesn’t entirely work. It means I don’t know what’s going on with my body, and I can end up adding to things, or not doing things that would help. I need to make the time to check in with my body and to try and make sense of what’s going on in here. Do I need more rest, or more movement? Do I need to massage painful areas? Or warm them? Or am I too warm?

One of the tricky things for me is that some of what goes wrong really requires rest, and other things that go wrong are best dealt with through movement, and that can all be happening at the same time. There are parts of me that aren’t handling temperature well and that I need to be careful about keeping warm. But I am also doing the menopausal things, and hot flushes don’t go well with that. I can end up both uncomfortably hot and functionally chilled, which is bonkers.

For anyone with multiple conditions, this is a potential problem. Especially around questions of rest and movement. Trying to balance the two is hard. Sometimes there is no right answer, and you simply have to decide what to trade off against what, and which price to pay. It doesn’t matter how good you are at listening to your body, if it has these kinds of internal conflicts, there’s no solution to find.

Some years ago I had a New Agey type try to tell me that my pain was a consequence of not listening to my body, and not being embodied. Having explored down this path, I am confident that it isn’t so. There’s only so much being embodied that I can take, most days. There’s only so much I can fix by paying attention. In order to work, to live and function, I frequently have to do things that hurt, or do them while hurting, and it is better emotionally and psychologically to tune out as much pain as possible at those times. If I let pain awareness take control, then doing the things that keep me moving and vaguely fit gets really hard. If I get weaker, some of the things that are wrong with me will get worse, and my overall heath will be undermined.

Listening to your body is good, but when there are conflicts about what would help, your body may well not know what to do either. For some people, showing up may well be enough to reduce pain. This won’t be true for everyone. We’re back to that old chestnut that if you can heal by making a few minor lifestyle adjustments, you weren’t in that much trouble to begin with, and your experiences aren’t a fair guide for what everyone else can expect.


Self esteem and pain

Ongoing pain can really undermine a person. It takes a toll in wellbeing, it eats away at your confidence, and it can undermine you feelings of self worth and self esteem. This can be especially bad if you need to hide your pain for the benefit of the comfortable people around you. Having to do everything a well person would do, but while hurting and pretending not to hurt is a course of action that may easily leave you feeling like you’re not a real person.

I’m heartily sick of seeing people who are suffering getting told off on social media for talking about their discomfort. I’m weary of people who are ‘depressed’ by other people’s difficulties and feel the right answer is to make the person who is suffering feel guilty and ashamed for talking about it, so as to shut them up. This adds more layers of suffering for a person who is already in trouble. We need to stop sacrificing people who are in distress just to maintain the ease of people who are already having a better time of it.

I wish we had the support in place that meant people who are ill could reliably afford to rest. I wish illness did not radically increase your risks of living in poverty. I wish we did not measure people so much by their economic activity. I wish there was more scope for people to heal and recover when they need to. I imagine a society in which no one was expected to push relentlessly through pain and suffering, and where we were not so quick to assume that someone struggling is lazy, or not trying hard enough.

Living with pain will eat away at your sense of self if there is no scope for that pain to even matter. If your life does not allow you to take care of yourself, if there is no one to help you, give you breaks or take care of you, suffering is inevitable. When your self esteem is constantly undermined in this way, it is that bit harder to hold boundaries, protect yourself or ask for what you need. And so you trudge on, hurting and exhausted, because trudging on seems to be the only option.

What would it take to change that? The answer isn’t about personal changes, and it should not be the responsibility of people who are suffering to find individual solutions to systemic problems. We need a kinder society where taking care of people matters, where there is economic support for whoever needs it, and medical care free at the point of delivery. We need a work culture that won’t punish you for being ill, and won’t break you with needless stress in the first place. We need the time and energy to take care of ourselves. It would be revolutionary to start treating quality of life like it matters, and not as a perk for those who enjoy the accident of being born into the most privilege.


How hard is it?

If you’re dealing with long term illness, pain or mental health difficulties, it can seem appropriate to try and figure out how hard things really are. How does your experience compare with other people’s? This will likely stem from a feeling that you are making too much fuss, and not being stoical enough. You may not feel confident that you are entitled to ask other people to take your suffering seriously.

Distress is not really a thing that can be measured in relation to other people’s distress. However, the urge to do so comes from experiences like being told you shouldn’t make a fuss because other people are worse off. By this logic, only one person in the world at any given time is allowed to make a fuss!

In any sane and compassionate scenario, what will matter is that you are suffering. If you have to prove you are suffering enough to be taken seriously, there’s something wrong with the situation. If you’ve had extensive exposure to having to prove your discomfort, you may be in the habit of doing it to yourself even when there’s no longer anyone around to suggest that it probably isn’t as bad as you are making out.

Many people have terrible double standards around taking their own discomfort really seriously while being dismissive of everyone else. It is of course the people who know perfectly well that they make a fuss about little or nothing who tend to mistrust other people’s self-reporting. People who are used to being comfortable often treat minor setbacks like a bigger deal, people who are used to being uncomfortable often learn not to let it be the most important thing.

I’ve noticed around my issues that I feel obliged to be able to explain and demonstrate things. If I am upset, I have to make sure that I can reasonably explain why I am upset and I have to feel confident that any normal person would also be upset in the circumstances. It’s never felt like enough just to not like something or be uncomfortable. I’m trying to stop doing this, and to make space for how I feel regardless of whether I can demonstrate the reasonableness of the feeling. I often catch myself accounting what I’ve done against how I’m feeling, like this is an equation to balance, and if I haven’t done enough to feel tired, I don’t feel comfortable stopping.

All bodies are unique, all situations are unique, all minds are unique. What someone else might do is not that useful a measure. How hard it is for you is the most important consideration. But, if you’ve had knocks to your confidence, or don’t get taken seriously, it can be hard to hang on to that. No one else really knows what anyone else is feeling or going through. How hard is it? Really only you can say. Feeling you are entitled to say can be challenging. Trusting that your experience and needs are what matter can be hard if you’ve been taught not to do that.

If you know it’s important to keep a sense of proportion… if you care about not asking too much of other people… if you worry about whether things aren’t as hard as you think they are… trust yourself. You are paying attention, you aren’t being self-indulgent, your experiences and opinions are valid. It’s the people who never worry about these things who tend to make a lot of fuss over very little. Try and work out whose the voices are that tell you your experiences aren’t valid – the odds are there are specific people who have downplayed your distress and treated you like you were playing up the discomfort to get your own way, or get out of something. You don’t owe those people anything at all.


Pain, Shame and Guilt

I think in many ways it’s a reflection of how seldom mental health is taken seriously that we add shame and guilt on top of people’s existing pain. No one who considered themselves kind and well meaning would tell a person with flu to just pull themselves together and try harder as though this is how you get over flu. We don’t tend to tell people whose bodies have been seriously injured that they should ‘man up’. Culturally we do have some serious and parallel issues around how we treat chronic pain and long term disability, but that’s a post for another day.

We treat psychological injuries as though they are personal failures and in doing so, add to the burden already wounded people are carrying.  Telling people the reasons you think they shouldn’t be in pain doesn’t ease pain. What it does do is help that person internalise shame and carry guilt about their own suffering. That in turn makes it harder to ask for help.

Depression isn’t an individual failing. Often the reasons for it aren’t personal, but systemic. Poverty and the stress of insecurity makes people ill. Overwork, leading to exhaustion and burnout makes people ill. Distress caused by mass extinction and climate chaos makes people ill. Being made responsible for things we have no power over also makes us ill. Here in the UK we have a culture of working people to death, blaming them for not being able to find work in a shrinking jobs market, causing poverty and then blaming people for being poor and a host of other such horrors that pile on the misery. The result is that not only do you get to suffer the consequences of stress and insecurity, but you get to feel like it’s all your fault for not being good enough in the first place.

If you do get help with mental health issues, the odds are it will be meds. That’s what we can have. Huge numbers of people are suffering depression and anxiety as a direct consequence of our messed up work culture and precarious lives. How can the answer to such system failures, be chemical? Use it to get by if it helps you, but don’t buy into the idea that meds are the answer here.

We have to stop blaming individuals for suffering and start talking about the way in which our culture is sick. We get less time off than your typical mediaeval peasant. The safety net of welfare is being eroded. We are punished for misfortune and poverty. We don’t have enough green space, enough quiet space or enough time to benefit from exercise. Many of us can’t afford to eat well. It is difficult to be mentally well in such a situation.

Mental health is a collective problem that needs solutions on a societal level. When we treat it as a personal problem to be solved at the personal scale, we add to the guilt and shame that makes people ill, and perpetuate the stories in our culture that are causing bodily and emotional sickness. Mental health is a cultural issue, a societal issue, a political issue.