Tag Archives: illness

Not everything can be fixed

Small things can be fixed. Small injuries can heal perfectly. Small injustices can be put behind us. Not everything can be healed. There are wounds that come to define us, experiences that shape who we are, illnesses that don’t go away and griefs that cannot, honourably be ‘got over’.

There is a big industry around the idea of perfect wellness. There’s a lot of toxic positivity out there that will tell you it’s not ok to be carrying something, or defined by your wounds, or still grieving. Not everything can be fixed, and it’s important to push back against the toxic positivity.

The idea of perfection can be a barrier to doing whatever healing might be possible. It’s better to learn how to carry grief. If all you hear is a message about getting over it, you might not be able to find the tools that allow you to move forwards, with your grief. Some losses define us. Some losses are too big and too important to ever let go of or move on from. But it is possible to make peace with the grief you are going to carry.

It’s much the same with the kind of illness that won’t heal. There is peace to be made. Compromises can be found, adjustments made. Sometimes it’s about learning how to make the best of the situation you’re now in. The notion of total healing can be a massive distraction from doing the things that would actually help.

It is better to put down the idea that everything should be fixed. It’s not a helpful idea. It can burden us with a quest for solutions that aren’t out there, or leave us feeling inadequate. Genuine healing can be much more about adapting and managing. Being able to cope is a good place to be. Doing the best yolu can with what you’ve got is the only measure of success worth caring about. Getting the hep you need to continue on your own terms is so much more valuable than being held to impossible standards of wholeness.

Some things can only be lived with. Anyone who tells you otherwise is probably trying to sell you some expensive bullshit intervention, or is simply in denial about their own potential fragility. 


Listening to your body

The idea of listening to your body comes up a lot around health work. However, I think it’s really important to ask why we might not be doing that in the first place. This won’t be an exhaustive list, do please add more in the comments if you see an obvious absence. Or an unobvious one.

You can’t listen to your body if your body is exhausted but you have to work. Poverty can make it impossible to take needful time off for rest or for recovery from illness.

Your body may require better food, more food, more protein, more fresh fruit and veg. If you cannot afford a better diet, you can’t afford to listen to your body. The same is true for being too cold, too hot, or in a situation of light or sound pollution you can’t do anything about.

You may have been told that you make a fuss, have a low pain threshold, overreact, exaggerate, lie, or that you just want to get out of doing things. You may have been taught to mistrust or disbelieve what your body seems to be telling you. This isn’t easy to unpick.

You may have listened to your body, consulted with doctors and discovered that there isn’t much that can be done to help you. This happens a lot around chronic illness, and you may be choosing to ignore things as being the best way to deal with them. If you’re not listening to your body as a way to stay sane and functional, that’s an entirely valid choice.

There are times when ignoring your body is vital. Dealing with addiction, or trying to break out of it requires you to ignore what your body is telling you. Changing your eating habits can mean ignoring what your body says. Overcoming anxieties can mean pushing back against the messages your body gives you. Some of the ways in which we are broken mean that we cannot trust our bodies to guide us. It’s hard work having to fight your own body, but sometimes that’s necessary for healing and recovery.

How we relate to our bodies isn’t just a personal matter. It’s held by a social context that can put all kinds of pressures on us. How many people are unable to eat properly because of the social pressure they feel to be thin? Not being able to rest, and not getting enough sleep are issues framed by working lives, social lives and often a technology-driven anxiety that makes us feel we have to be available to people all of the time.

It is good, often, to listen to your body. Sometimes it is essential to ignore your body. It helps to know what you’re doing and why. Some of these issues simply can’t be handled at the individual level and require cultural change, so it’s also really important not to blame or shame anyone who might be trapped by circumstance, and by what capitalism does to people. Not everyone can break out on their own.


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.


The politics of illness

I’ve been struck by the massive and wide reaching political implications of the coronavirus. There’s a lot to think about here.

Governments that put people before profit are clearly going to take better care of their people. Leaders who believe experts and take science seriously are going to be an advantage to their populations. Societies that organise for mutual aid and protection will do better than anywhere dominated by rampant capitalism. This may change how we think about politics and politicians.

Good leadership will reduce panic and focus people on what they can usefully do. Good information will help us stay safer, slow infection rates and protect the most vulnerable. Governments that don’t do that will put their people at risk.

There are many things we’re now looking at that we could have had all along – working from home, conferencing and studying from a distance, cutting back on travel. These are things that would always have helped disabled people. There will be no excuse moving forward, for not being a good deal more inclusive – clearly we can do this. These measures also reduce the need for travel, which has huge environmental implications and again, we should have been taking this seriously already.

Western countries that have been so intolerant of people fleeing war, famine and climate crisis need to get some perspective. If we look at our own responses to this threat, we might see people in other kinds of crisis in a more compassionate light. Many people around the world suffer a lot more, with considerably more stoicism and sense than white and reasonably comfortable panic buyers around the world have been demonstrating recently.

If your healthcare is free at the point of delivery, sick people won’t be afraid to come forward. People who are identified and treated are less of a risk to others. State funded healthcare is in everyone’s interests.

If you have good laws around work and sickness, people don’t have to work when sick. All diseases, coronavirus included, won’t spread as much when ill people are allowed to take time off to recover and not infect others. Flu kills a lot of people every year – there’s a lot we could do to reduce misery and suffering if we had a better work-health culture in the first place.

If we had universal basic income it would be really easy to shut down all non-essential work for a few weeks to reduce transmission.

The more structures, networks, systems etc your country has in place for taking care of people, the easier it is to respond to an emergency. If we focus on profit and efficiency, we pay for it in terms of resilience.

Coronavirus at its worst affects breathing. It is known to hit smokers hard. Clearly, air pollution will also create increased vulnerability. Our polluted commons make us much more vulnerable to diseases. We need to recognise that human health and planet health are the same thing.

Perhaps some good can come out of all of this. Perhaps we can start recognising how much we depend on each other. Health needs to be a collective concern. It needs to be framed within the health of our world as a whole. The politics of profit and growth are killing us, and this is just another example of that playing out. We need to change how we think, and stop treating people as expendable, and economic growth as a master to be served in all possible ways.


Magic, illness and discipline

Most forms of magical and spiritual practice depend to some degree on concentration. It is feasible to do contemplative meditation when you can’t concentrate – by having an object that you return your thoughts to, for example. It is feasible to undertake prayer or ritual with an unfocused mind, but it is probably less effective.

Spell based magic is all about your will. There’s nothing like pain or illness to reduce the power of your will, and to make that kind of focused intensity difficult to maintain. All of us will go through times when we don’t have what it takes to act magically. Some of us will be like that most of the time. So, what do you do if you want magic in your life, but can’t rely on having the attention span, the concentration, the focus or the willpower to work it?

Aim small. Ignore the useless advice that if you can’t meditate for half an hour you should meditate for an hour. Better to have five minutes of quality engagement than a longer stretch full of frustration and misery. Look for acts of magic and spirituality that operate on a scale you can handle. Look for ways of working that allow you to come back regularly and do a small thing. Don’t tie yourself to fixed times because you might not have the clarity at those times. Work when you can.

People who are hale and hearty can be very comfortable telling people who aren’t to try harder. If you are ill, the limits of what you can do are often a simple fact. Trying to push for more can often result in a backlash that lets you do even less. Only you can judge this. Experiment on your own terms and don’t feel pressured into doing things the way other people think you should.

Look for opportunities for magical experience and transformation rather than acts of deliberate change. Being in a ritual can be transformative. So can sitting out with access to trees and birds or water or sky. Having an altar and spending some time with it can make room for things to come in. So can creativity.

Pain and illness can make it hard to think that good things of any shape can happen. The longer it goes on, the more it can lock you down and make you feel limited. Looking for small moments of beauty and wonder can be a way to offset this a little. Sometimes there are blessing amongst the miseries. There don’t have to be, and it isn’t your job to be relentlessly cheerful or to find shiny blessings in a shit storm. But at the same time, there’s much to be said for making the best of what you’ve got in whatever way you can.


Illness, ambition and thwarting

I had a lot of plans for 2018. Some of them were bold and ambitious in their own right. More were about the trajectory I want to take. The things I want to lead on. The stuff I want to be more involved with. Mostly it’s not gone to plan.

Back in November 2017 we did a week in a gallery and a night at Stroud book festival and I had what was probably bronchitis. It took me weeks to recover, and we didn’t go to Steampunks in Space because I wasn’t equal to it. And I’ve never really got back on top of things since then. Nasty colds, the flu, beaten up by the menopause, leading to bouts of insomnia, gut fails and now some kind of virus that really has it in for my glands. It’s been relentless. Also a lot of low level depression and anxiety.

So as the months have progressed, I’ve had to put aside all kinds of plots and schemes. I’ve not enjoyed letting them go, it’s been frustrating. Many of them can be revisited, or I can try for them next year, instead, but even so. There are things I wanted to be doing now, and I’m not. I feel that if I’d been able to get on with things, other unforeseen possibilities would have resulted.

This of course is the thing about unforeseen consequences. There is no way of knowing how this would have played out if I’d been able to go for it on all fronts. I have no reason to think it would have all gone my way. I could be looking at burnout now instead of feeling thwarted. There is no knowing. I’ve done the best I could with the resources I’ve had, and that’s all there ever is.

One of the things this time spent being relentlessly ill has given me, is serious space for reflection. I’ve taken long, hard looks at what I want and why. Things have emerged from this that maybe wouldn’t have occurred to me otherwise. Whether they turn out to be better things, I will never know.

I could choose to give up in face of this – on some or all of the ideas I had. I could choose to ignore the setbacks and push ahead with everything, regardless. I could make it a life lesson about ego and ambition and nature teaching me a stern lesson. I could make it a story about heroically overcoming setbacks. The story we choose to tell will shape our actions and results – sometimes more than any other aspect of a situation.

On the whole I don’t have the energy or inclination for making big stories out of being thwarted, not at the moment. This is also a choice with implications of its own.


Low energy, decent output

Recently, Jen over at Liminal Luminous blogged about the problem with the perceived need to work long hours in order to be successful. As a person with limited energy, Jen obviously struggles with this and it struck me that I might be able to speak to this in a useful way. So, here is what I know.

Firstly, take the time to define success. Is it just about money? Success can mean best outcomes, quality of life, friendship, doing inherently rewarding work. Once your physical needs are met, more money doesn’t confer significantly more happiness anyway.

Secondly, most of us – even the entirely healthy people – are only really good for about four hours a day. You may not be able to manage four. Work out how many hours you are likely to have of high quality output. Once you get beyond those hours, the quality and speed of what you can do, will diminish. People tell themselves that they’re working hard when they’re working long hours. The odds are for much of that time, they are working tired, inefficient and not capable of their best thinking. Long wasted hours are of no use. Be clever. Make the most of your best time and then rest.

None of us can work flat out all the time. Whatever you do, you need time to re-charge, and to let your mind chew on things in an unstructured way. I don’t have good ideas while I’m busy working. I have good ideas when I’m walking, crafting, and cleaning. I work more effectively when I have a coherent plan, considered goals, a sense of direction and new ideas. I don’t get those by trying to work all the time, I have to make quiet space for them. If I’m not well rested, I’m not able to work.

Being uber-busy is not sustainable. Sooner or later, you burn out, or crack up, or get sick. Again, this is as much an issue for people who started out well as it is for the rest of us. Burning out, cracking up, getting sick, succumbing to anxiety and depression… these are not things that improve your productivity or bring success. Being ill is not a winning outcome. Being too ill to keep going is not a winning move either. Plan for the long term, and remember that your health – mental and physical – is also a measure of success. For some of us, simply staying viable is an epic win. If you trash your health for the sake of money, you are not going to be successful in the medium to long term.

The trick is pacing. Know your limits and you can make the best use of what you’ve got without pushing yourself into dysfunction. If you’re going to be self employed as a person with chronic illness or energy problems, then there are ways to make it more viable. It might sound blindingly obvious, but you have to focus on what you can do rather than what exhausts you. There’s no point aspiring to be a paid youtuber if sitting in front of a camera wipes you out. Look at what your body and mind can sustain. Ask what you can do most effectively in the time available to you. Look for the resources, platforms and opportunities that suit how you can actually work, not how you think you’re supposed to work.

Being an overnight success takes years. It takes most businesses three years to starting breaking even and moving towards profit. If your primary cost is your own time, you can do better than that. The temptation of course is to try and speed up your profit making by throwing more hours at it, but that isn’t a sure fire solution.

I reliably have four hours a day, often more but with that extra being less clever, plus uncertainty as to how much more from day to day. I do the most important bill paying work over four mornings a week. I do the more speculative stuff in the afternoons. I get far more done now than I used to when I was trying to work eight hour days and more. We get by financially, and I am far less ill than I was because I have more time for self care.


Working when ill

It’s something I’ve done a lot of over many years. One of the advantages of being self employed is that you have some flexibility when sick. You also have no scope whatsoever for sick pay, often there’s no one who can cover for you, and being ill can be expensive in that it can cost you future work. Increasingly, conventional workplaces seem to be pressuring people to work when ill as well.

I know from experience that I’m considerably less efficient when ill. It plays havoc with my concentration. I move slowly, making more mistakes, my judgements are never as good, I don’t have good ideas. There isn’t an ailment out there that won’t be easier and quicker to deal with if you’re able to rest, and won’t be exacerbated by additional stress. And some illnesses are contagious, and taking those to visit other people isn’t nice. The idea of keeping a human working when they’re sick clearly isn’t informed by anything real about the implications of illness.

Over time, there’s a bigger and more insidious impact to working when ill. It dehumanises you. It takes away the sense of being a proper person with the same rights as other people. You’re just a thing to keep slogging along to get the work done. This is one of the ways in which a physical health problem can easily develop into mental health problems as well. Exhausted, demoralised people who are obliged to keep suffering are likely to end up with low self esteem, anxiety and depression at the very least.

I will do the things I absolutely have to do, and then I’m heading back to bed with a book – because I can, and it’s a far better idea. There will be many other people obliged to work a full day today, despite being sick. Some of those people will be doing unpaid domestic work, but that doesn’t guarantee you respite, either. Given that the amount of work available is decreasing as people are replaced by machines, we could collectively square up to this and bring in a citizen’s income, so that no one has to work full time, and no one has to work when they’re ill. Failing that, better worker’s rights and a better social safety net would be a great help.


Thinking about mental illness

How we think about mental illness, collectively, informs how a person who is suffering is able to behave. If we treat mental distress as something to be got over by ‘pulling yourself together’ or as not a real illness, then people suffering have little choice but to slog on, right up until they can’t.

I’ve found from personal experience over the last year, that if I draw direct lines between what I’m experiencing and some kind of bodily ailment, that I can make better choices about how to deal with it. What I’m going to offer here is crude and limited, but I hope it will work as a place to start.

A mild dose is like having a cold. It will probably clear up on its own in a fairly short time frame and it is possible to keep going and do all the things, although I’ll feel shitty and demoralised. Some time off would speed recovery.

A more serious bout is like having the flu – I really am going to need some time off to recover, I won’t be able to keep going as usual. It could knock me about for a few weeks and I’ll need to take things gently.

At its most serious, it’s like having pneumonia. There’s no way to keep going as usual, serious interventions, including medication and hospitalisation can be a consideration. Like pneumonia, serious depression can and does kill people and needs treating with just as much caution.

One of the important things about relating depression and anxiety to physical ailments is that it moves us towards treating the whole process as a bodily condition. I find this incredibly helpful. It’s not a failing, or a lack of will, or insufficient effort, any more than getting the flu is those things. Care and attention are required for recovery, but recovery is possible. For those who are afflicted in the longer term, other bodily analogies may prove more helpful.

Fevers are a useful analogy because when feverish, we can think all kinds of odd things that we wouldn’t believe for a moment when well. We can see and hear things that are illusionary. A breakdown in mental health can have a person thinking and believing all kinds of unhelpful things. If you can hold onto the notion that what’s happening may be a lot like the flu, it’s possible to avoid believing that the fever dreams of anxiety are based in reality. If depression and anxiety are things that are happening to you, not things you are, then it’s a good deal easier to resist them.