Tag Archives: illness

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.


Illness and the magic thing

It’s important to talk about mental illness. Only by talking about it will we challenge the stigma, get rid of the inaccurate myths, challenge assumptions and improve things for everyone.

One of the big problems with mental health is that we treat it as an individual issue, with little or no reference to how context impacts on wellbeing. One very significant aspect of context is the way in which other people react. I’m conscious that many of the same things hold true for chronic illness. Certain kinds of responses silence people who are suffering, make it harder for us to ask for help, and can increase distress, anxiety and alienation. How people react to illness can make ill people more ill.

The big one (I think) is the idea that if we only tried harder and/or did ‘the magic thing’ we’d be fine. What ‘the magic thing’ is varies, but it will be something the person we’re dealing with is sure is a fabulous fix for everything. We’re told we should be on medication, or shouldn’t be on medication. We should make more effort, or get more rest. We should stop eating a thing, or start eating a thing, or do yoga, or practice mindfulness…

The person who says ‘I’m really struggling right now’ is not helped by being told they need the magic thing to fix them. Not least because we’ve all tried a whole array of alleged magic things already, and they mostly don’t save us. When you’re down, and beaten and exhausted and everything is hard about the least useful thing to hear is that you should be making more of an effort with something. Fear of dealing with this silences people, encountering it can kick those who are already down.

The motives for how we respond to illness in others stand questioning. If we make a suggestion to someone else, we may feel that’s us off the hook. We did our bit. We have no further responsibility. We may believe that because we are well, that something we are doing is the reason for this, and not that it might just be luck. Belief in ‘the magic thing’ protects us from having to be afraid that we could be unlucky and get sick. It may also allow us to feel superior, that our cleverly doing the right thing is keeping us well while others fall and suffer because they aren’t making as much effort as we are. Being blamed for illness adds to depression, despair, and a sense of alienation.

There is a balance to find here, because information sharing is a good and often helpful thing, but unsolicited medical advice from strangers is often demoralising. The thing to watch for is the tone. Sharing in solidarity – here’s the thing I tried, this is what happened – can be really helpful. ‘You should do this’ has a very different tone. There’s a power imbalance in it, a disrespect for the person on the receiving end. An implied superiority on the part of the person dishing out advice.

Another way of silencing, dismissing and injuring people who are ill is to tell them off for it. People who are told that expressions of distress are basically attention seeking and not ok learn not to mention it. You’re just making a fuss. You just want to be the centre of attention. You’re playing the victim again. You’re such a martyr… Which begs the question of why a person who is suffering should not be able to say so? The answer is all about the discomfort of the listener being more important than the distress of the person who is distressed. When you are deep in depression or other illness, and the distress caused by saying so is deemed more important than what you’re going through – that really doesn’t help. It’s a massive blow to self-esteem.

Depression and anxiety are at epidemic levels right now. We won’t change that without changing the context in which people are experiencing things.


Working Sick

One of the good things about being self employed is that you do get some say (usually) over how and when you work. There are no paid sick days though, and while you can get insured against the impact of long term illness, a dose of the flu is something you just have to deal with. So, sleep deprived because I was ill in the night, and washed out for all the same reasons, and with something a long way short of perfect concentration, I rock up late to the computer.

It’s not too bad because my co-worker (husband) lives with me and is exposed to my germs anyway. If I had a ‘normal’ job, I might be hauling my sick, exhausted self into a car (I would not be a safe driver) and going to share my germs with my colleges, and possibly the public.

I know from friends who are employed, that many workplaces are intolerant of sick days. You are expected to go in, which of course means you get a culture of germ sharing where more people are working sick than could have happened. It invariably takes longer to recover from anything if you have to put extra stresses on your body. A day in the duvet can massively increase productivity for the rest of the week.

But no, what we have is a culture of macho toughing it out, drugging away the symptoms (let’s pause and ask why we may have the shits and wonder what the consequence is of not letting our bodies flush the bugs out…).

Pushing when sick or exhausted increases the risk of mental health issues. Depression is likely, so is panic, because when you push a body too far, that’s how it reacts. There is a rise in mental health difficulties that a Chief Medical Officer’s report of some years ago explicitly linked to work place stress. Everyone seems to have ignored this.

So, I managed the commute to the table, I won’t be doing much, I will likely spend a lot of the day curled up, recovering. I’m going to do the essential stuff, so that it doesn’t all build up and get more stressful. This is a luxury many people don’t have. It’s a funny thing, because work, workplaces, and working cultures are all human constructs, but they’re pretty inhuman in practice.


Diseased Druid

Yesterday I was too ill to make it to the desktop computer, so there was no blog. One of the plusses of being self-employed is that this very seldom happens. When I’m merely a bit ill, I can keep working. That I need to is part of the downside of being self employed – if I don’t work, there is no sick cover. I’m paid for what I do, more often than not, but if I get ill and can’t work for a long period, this is unnerving. Usually I’m not so ill that I can’t push through it.

‘Can’t’ is an interesting word though, and one we all bring into play at different times. I tend to be fairly literal about it – ‘can’t work’ tends to mean fever, inability to actually sit in an upright position, so sleep deprived that I can’t concentrate and the like. I also know from experience that if I have to, even that level of  ‘can’t’ can be pushed. I’ve done school runs on foot, feverish with tonsillitis because there wasn’t any other option that day.

‘Can’t’ is more of an option when you have a safety net. If someone else can catch the critical things that are challenging, it is easier to lie down and quit for a bit. The winter before last, when I had pneumonia, Tom did all the shopping. Long cycle rides in the rain to fetch groceries. A task that normally required us both, he took the extra load, quite literally. But then, there are some illnesses (and pneumonia is one of them) where stoically battling on can kill you.

I marvel at the array of different human responses to discomfort and disease. The people for whom a bruise or a cut is worthy of comment, through to the other extremes of people who push through chronic and even terminal illness because there are things they want to achieve. The worst thing we’ve endured is the measure of what we know we can take, so those who are relatively pain free and healthy tend, in my experience, to make a lot more fuss about minor setbacks than people for whom those small things might be less of an issue than what constitutes business as usual.

Our baseline for compassion also has a lot to do with experience. It’s easier to empathise with someone if you have some faint clue as to what their experiences may feel like. Those who have lived well and pain free, for whom a scrape and a bump is the worst of it, sometimes find it very hard to make sense of the people for whom pain is a constant. And so you can get into situations where the relatively unscathed demand a lot of attention for minor ills but do not take seriously the ongoing suffering of others.

One of the things I notice about people I know who live with pain, restricted mobility and serious ongoing health challenges, is they often learn not to make much fuss. Partly, I suspect, because the baseline for normal shifts over time and with it shifts the point at which it feels worth saying something. There is the fear of being seen as a nuisance, by those who are not suffering and who will be bored or offended by the details. There is pride, and the determination to be independent, as far as possible.

What a person says about their struggles, illness and difficulty, of any variety, is not any kind of absolute measure of what they are up against. We’re very quick to judge each other, especially if there are questions of our time and energy being required to cover for someone else’s illness. It is inconvenient. They may be making a fuss about nothing. They may also be making far too little fuss about a great deal and it’s worth remembering (having seen a few very close calls with other people) that this degree of stoicism can prove fatal.


Fear and faking

When is it ok to stop? When can you say that no, that’s the limit, and be confident that you aren’t just being lazy or making a fuss? How do you tell if you’re being a hypochondriac, a drama queen, attention seeking with a low pain threshold and no ability to endure?

I have found that mostly I can push through pain, exhaustion and illness alike. It comes at a cost, as I get ever more tired and eventually mired in depression, but it can be done. Today, it took me an hour to work up the will to haul my tired and hurting body out of the duvet, but here I am. With the mantra ‘it’s just pain, it doesn’t matter’ I have pushed through all kinds of things. Memorably, I went to seven (out of the necessary ten) centimetres dilated pre-birth with no pain relief, and the people around me treating me like I was making a fuss, and probably over reacting about saying it hurt. In hindsight I think if I’d been screaming they might have taken me more seriously.

Through much of my life, the message has been simply that I’m a lazy hypochondriac and all that other stuff, and if I’d just pull myself together and make an effort I’d be fine. There is nothing wrong with me, apart from my attitude problem. The one time I tried to talk to a doctor about the exhaustion and the things I struggle with, I got it from him, too, and have not been able to face going back for another round of humiliation and blame. I’ve been told (not by professionals) the muscle pain is because I am too tense, and if I made the effort to relax, I would not have a problem. And yet I watch people make, what seems to me to be epic amounts of fuss over injuries so minor I wouldn’t even mention them.

I do not know how you tell when it’s ok to say ‘I can’t’ because when it comes down to it, mostly I can. Sure, my hands are hurting today, and I’m thinking slowly, but I can write a bog post. I can sort my email and do a few jobs. If there was something more important to do, I could push and get it done. As a consequence of that, and because I’m used to being told I’m not trying hard enough, I find it hard to stop. The last few years have brought me, for the first time in my life, people who suggest I should be gentler with myself. People who tell me that it is ok to rest, and that I am not lazy. I have trouble reconciling these perceptions, and I feel like a fake. I fear that the people who are being nice to me will eventually realise that I am a lazy hypochondriac, and the warmth will go away.

Some of this is about the balance between comfort and utility. For most of my life, the only thing that has seemed to matter is how much use I could be. I am surprised when that’s not the size of things. I do not know how to handle it. I hear the people who encourage me to think that my own comfort and feeling of wellbeing has an innate value, and I struggle to know what to do with it. It is the difference between being a useless thing, and being a valued person.

Machines are not supposed to stop, and if they do, you apply the appropriate duct tape equivalent and keep going. People are not machines, but if the people in your life do not allow you to be a person, it can be hard hanging on to that. Permission to be a bit inconvenient now and then, is a powerful thing.


Survival tactics

I’ve been through some rough times, dealing with depression, anxiety, stress and bodily unwellness. It would be fair to say that in terms of managing all of these, I have been a slow learner, not least because I’ve been resistant. Working out how to manage a thing depends on admitting there’s a problem, and that took me a long time. Dealing with a problem depends on treating it as worth bothering with. For reasons I continue to grapple with, treating my own difficulties as something that matter does not come easily to me.

However, I’m aware of friends who are walking the dark places at the moment and suspect there are others, so survival strategies might be useful just now. Those first steps of noticing and bothering are vital. If you are depressed, crippled by anxiety or in pain it can be surprisingly hard to notice that there is something wrong with this, and all too easy to feel like you’re a failure when you need to be recognising that you are a person in trouble. Self-blame is a natural default, almost a symptom of the problem, for some of us.

Trick one is to keep moving. This kind of illness will tell you that all is hopeless and that no matter what you do, you will be ground into the dirt. If you quit and go to bed, it’s very easy to stay there, giving up and spiralling ever lower. Keeping moving allows you to resist the feeling of doom. Getting something – anything – done, gives you something you can but between you and the feelings of helpless worthlessness. How to do this, follows.

Trick two is to get the basics straight. These give you a sturdy platform from which to tackle the rest. Keeping yourself clean, fed and comfortable can seem both monumental and pointless when you’re ill. However, having those things sorted will improve your morale and self-esteem. Not eating only adds to feelings of depletion and misery. Move slowly, but take some time over your appearance. Do something nice. Eat well.  Take care of your space. Get the people around you to encourage and help you in this. If the people around you will not encourage and help you, then you’ve just identified a big part of your problem. Sometimes it turns out not to be depression, but that we are surrounded by arseholes. Prioritise doing the things that make you feel better.

Trick three is dealing with the big stuff. Often depression, anxiety and bodily illness are triggered because some vital thing has gone horribly wrong, and crushed us. Again the feelings of futility will make it hard to get things moving. Not tackling the sources of fear actually feeds the fear. So, draw breath, and then start fixing. Make a list of what needs doing. Break each item down into its smallest component parts, and get the running order right. Take your time, because this is your battle plan and you need it straight. If there is no required running order for it, start with the easiest stuff. Get some wins under your belt. Tick things off as you do them and remind yourself of the progress made.

Pretty much anything, no matter how daunting, can be taken on in this way, and worked through. Speaking as someone who has taken on battles I was told could not be won… and won, I say it can be done. So long as you keep moving, it can be done. There will be some kind of answer, some way of managing it, or making it better, or getting through and if you are moving, you can get to those answers.

Trick four, rest. Give yourself as much time as you can between the big pushes. Read. Walk. Watch a film. Go to bed. Be as possessive of your energy as you can be, and demand the time to do the things you need in order to keep going. Half of what gets people in trouble is not guarding personal resources, often. To get through, you are going to need to protect yourself. “I can’t, I’m ill,” can be a very hard thing to say, but also wholly necessary if you are to avoid being entirely broken. If there are people or situations making you more ill, acknowledge it and get out, even if it hurts. No one should spend more time than they have to places that make them sick. If you can’t get out, mitigate, give yourself more time off, find offsets, seek bargains. Do what you can to make it bearable.

Take yourself seriously and treat yourself like you matter. Take your problems seriously and treat them like they matter, too. You are not making a fuss, and you have the right to an ok life, and no one has the right to work you to death, make you sick with stress, to abuse your body, torment your mind or make existing unbearable. If you need something that is not what you’ve got, seeking those changes can be doubly hard, when you’re also dealing with illness. Take that seriously, too. What keeps us ill is all too often unwillingness to own the illness, name it and tackle its root causes. Most sickness, bodily and of the mind can be alleviated to some degree, but only if we own it, name it, and make the changes it requires. It isn’t easy, but the less easy your circumstances make it, the more you need to acknowledge that your circumstances are a big part of the problem.

And good luck to you.


Dealing with depression

If you’re lucky enough not to suffer from depression at some point in your life, the odds are good you’ll need to deal with someone who does. How you handle that will have impact on the sufferer. To which end I’d like to put in some requests, based on things that have really knocked me about on a few occasions now.

Depressed people are hard work. They will not cheer up because you asked them to, they may not get over it any time soon any more than a person with flu will recover because you showed them cute cat pictures. Do not get cross with ill people for things beyond their control. Depressed people are not given the option, actually, to just pull ourselves together and get over it. We may be able to fake viability in short bursts, but that can be costly and is not available to everyone. Pointing out to a depressed person that it’s like pouring your energy into a black hole (I’m quoting, I had that one) is not going to help them. Rather the opposite.

You may find dealing with a depressed person is hard work. That’s actually fine. Ill people are hard work, and when the people we love are ill, we deal with that. It’s a working definition of what love means. If you are a full time carer, or a long term carer, then yes exhaustion is a real risk for you and yes taking care of yourself is important. No ill person who is free from psychotic tendencies actually wants you to martyr yourself for them. The reverse is more likely true: Ill people, be that the bodily ill or the mentally ill, usually fear being a burden. The keen sense of uselessness haunts many people who are unwell. Furthermore illness of all kinds impairs self-esteem, and depression sufferers are likely to have low self-esteem in the first place. If you tell an ill person how difficult you find them, how exhausting and draining they are, you will cause considerable harm. Depressed people may not need much persuading that the world would be better off without them. People die of depression (via suicide), so this is an appeal not to add to that.

If looking after someone is hard, take that to another friend. Go lean on someone who can bear it. We all struggle, and long term illness in someone you care about is frightening and demoralising, and actually they probably know that, but your gift of not making it explicit to them is priceless.

If really what you want from the situation is to have someone tell you how good and noble you are for putting up with this shit, move on. You are in it for your own ego, for pride and self-importance. The odds are you will do more harm than good. If you need the ill person to be terribly grateful, always impressed, always thanking you, what you actually want is them always to be vulnerable and inferior while you get to feel important. People who play that game will go to surprising lengths to keep their victim ill or down just so that they can keep rescuing them. It’s not helpful. Don’t be that person.

If you are suffering because someone you love is suffering, there is no shame or wrong in that, and that pain can be shared in mutually supportive ways. Watching someone suffer and being unable to do anything to help, is hellish. It hurts like nothing else. Owning that frustration can easily be an expression of love. Not owning it, but turning it into something to blame the other one for so that you do not have to feel guilty about being powerless… that doesn’t help anyone, ever.

It is one of the hardest things to hear that you are harming other people by being ill or in pain. When there are things you have no control over and you desperately need help and support, being told you are expensive, a nuisance, a drain and making other people ill is the sort of experience that can leave you wanting to die. I’ve had it happen more than once, and it’s left me wounded and flailing every time. When people are already down, already broken and barely able to function, these extra blows to sense of worth are nigh on impossible to take. If you love someone, you do not count the cost. If you are counting the cost, please consider that the kindest and most responsible thing you could do would be not to mention it.

Thank you.