Access and Anxiety

Anxiety and some kinds of neurodivergence can make the uncertainty inherent in an event a real barrier to participation. These sorts of issues can be easily overlooked and can result in excluding people who could have participated with the right support. Accessibility isn’t just about whether a person can physically get into the space, barriers are not just about bodies.

I’m no great expert on neurodivergence. My understanding is that unfamiliar things, changes to routines, and other kinds of uncertainty can be immensely stressful for some neurodivergent people. Knowing things in advance so as to be able to feel prepared can make a great deal of odds and reduces anxiety.

I do know a fair bit about anxiety. Given an empty space, the anxious brain will just go ahead and plug in disasters. The more you know, the less room there is to unleash the panic weasels, and the more manageable the situation becomes.

What kind of thing a person needs to know about is probably going to be quite variable. Based on what I’ve seen around event organising, the most important thing is not to be complacent around requests for information. Don’t assume people are being unreasonable or demanding if they need to know about something ahead of time. Also, they probably aren’t going to tell you if they have sensitivity issues caused by autism, or a hard time imagining unfamiliar things, or are checking to avoid trauma triggers, or need to stop their brain from coming up with a hundred potential disasters.

If you don’t know exactly how something is going to work, tell people what you do know – try and work out what the limits are. Consider asking if there’s any kind of information they need. Make it ok for people to step out if something turns out to be too much for them. Actively support people whose psychological needs are different from your own and don’t expect everyone to be the same.

It shouldn’t matter why people are asking for information and help – in that we should not have to be persuaded they have a specific need in order to act on requests like these.

Managing the energy

For some months now, I’ve really been struggling with energy levels. It’s affected what work I can do, and how far I can walk. It’s also been depressing and worrying. I’ve been making a lot of changes in order to try and handle things better and in the hopes of being able to recover from this to some degree.

I notice that I tend to think of poor energy as a head issue. It’s one I’ve previously dealt with by applying willpower and pushing through. Like a lot of people dealing with fatigue, I have a history of not being taken very seriously and being encouraged to think of it as a personal failing, not a body issue. I find that when I treat low energy as something that is happening to my body – not as a failure to make enough effort – I can improve things. Mostly it’s about food and rest.

Increasing my food intake often helps. Even if it doesn’t solve the energy problem, it tends to ease the panic and depression that go with having run out of energy. Toast is my friend. Fruit is also good. Plant-milks are easy to digest and sometimes biscuits are the answer. I have to remind myself that comfort eating doesn’t make me a terrible person, and that I am allowed to do things that help me feel less horrible.

Rest makes a lot of odds, and as I’ve explored in previous posts (Doing Nothing) sometimes flopping in a heap is about the only option I have. I’ve established that how and when I rest makes a lot of odds. It is currently fair for me to assume that I’ll get three or four hours in a day with good concentration and scope to be active, and that I might get a few hours beyond that where I can do some things in a more limited way – reading or crafting perhaps. I can no longer just work flat out in the way I used to. To have four hours or so of good brain, I have to take breaks. Slow the pace and more becomes possible. I still have to be careful not to wipe myself out, but pacing is clearly key.

I have to prioritise. I have to say no to things. I have to make the time to stop and recover.  It’s a lot to learn and is requiring me to identify and rethink a lot of beliefs I have about myself. I need to feel that I am allowed to rest, and I need to deal with the voices I have internalised that tell me otherwise. If I keep on as I was, I will likely get worse. If I can change things, there’s some hope of turning this around.

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.

Trusting my intuition

I have a hard time trusting my intuition. It’s something I’ve been exploring deliberately this year. I’ve also found myself in situations where there are no other sources of information, and intuition is all I’ve had to go on. At this point I’ve come to the conclusion that I can afford to trust what I intuit.

One of the single biggest problems for me in all of this is that I suffer from anxiety. I have a powerful imagination and can come up with many ways in which a situation could go wrong. There are reasons, rooted in my history, that make it hard for me to imagine good outcomes. It is hard to trust my intuition when my anxiety is screaming ‘you’re doomed’ and my imagination is playing out all the worst case scenarios. It’s not easy to tell what is just anxiety screaming, and what might be something else.

Being an anxious person, I tend to assume that any hopeful feeling is just wishful thinking on my part. I have been in the habit of writing off any good or uplifting feelings on the basis that they must be irrational. This hasn’t been helpful.

The answer has been to make time and really sit with whatever I’m feeling. To pay attention to what fits in my habitual thoughts and what doesn’t. If I interrogate those impulses I can often tell what is just anxiety as usual happening for me. Alongside that I’m making a conscious effort not to dismiss out of hand any possibility that doesn’t lead to crushing failure, disappointment and distress. Sometimes things do work out well, and I have evidence of this. I no longer live in a situation where there is someone intent on crushing me, and I no longer need to assume the worst for my own safety.

My intuition has room for the best in other people. It has room in it for hope, and good outcomes. My intuition is much more open to trust than the rest of me. It’s a small voice, long ignored, but this year it has held up where conventional sources of insight have failed. My intuition has kept me going where otherwise I might have broken down entirely. I do not have to accept a life without hope and possibility. I can consider that better outcomes are possible. I can afford to trust existence and the universe to be neutral towards me, not actively hostile. I can trust myself, and I can stop feeling that my more hopeful impulses are naïve, self indulgent or ridiculous.

Shadow Work

I admit the idea of shadow work always scared me. The idea of it – based on what little I’d read – seemed really intimidating. Go down into the most awful parts of yourself and face them… Mostly I try and keep the awfulness locked down, under control and hidden away. I can’t bear to go there. This year I’ve had no choice.

For as long as I can remember I’ve had a keen sense of my own awfulness. There are parts of me that, if they got out, or out of control, would do terrible things. It has always seemed very important to be very in control all of the time and never drop my guard to let the awfulness out. Except, when I’ve tried to face it, I struggle to find any evidence to support that.

There are things I’ve been told about the kind of person I am, that have made me afraid of myself. The idea that I’m so terrible that I can’t even see how terrible I am is not one I came up with by myself. I’ve been told if people knew what I was really like, they’d want nothing to do with me. I’ve been told, relentlessly, how difficult, unreasonable, prone to over-reacting and whatnot I am, and I’ve stayed afraid of the things in me that I must keep locked down at all costs. I’ve accepted that because I am a monster, it’s not just ok, but necessary to punish me, control me, keep me inline.

Delve into the shadows, and all I can find is the times I was told what an awful person I am. Not the bit before that when I did the awful things. There are no pets I killed, no violent assaults on anyone, no rounds of being suspended from school or taken in for police questioning. There was nothing I set on fire or deliberately broke, I did not threaten anyone with violence. I was a quiet, fearful child who could barely get a sentence out without stuttering. I was an anxious, nervous teenager trying to be more than that. I was and am flawed in so many ways, but there’s no real evidence for the dire monstrosity then, or in my twenties.

The big fear is that it exists and I can’t see it. I remember being told how aggressive I am when I’m upset, how I lash out at people and hurt them in retaliation and don’t even know that I’m doing it. And how afraid I became of what I might accidentally do if I was upset and not careful enough about how I expressed that.

I have looked into my shadow, and it is full of pain. It is full of times when I could have used some kindness and patience from others. It’s full of being knocked down and blamed, and made responsible for having been hurt. It’s an ugly mess in there, and not territory I am keen to visit, but I’ve been obliged to, repeatedly.

And so I find myself asking some really uncomfortable questions. What if how I am treated is not automatically a fair measure of what I deserve? What if I’m basically ok, certainly no worse than anyone else? What if the monsters I am afraid of aren’t real, or part of me? What if my shadow self isn’t full of appalling horror that must be kept hidden, but is just where my child self is huddled up, lost and frightened and in need of rescue.

Breakdown and breakthrough

CW trauma recovery

Healing can be a messy process. When it comes to matters of mental health, there are points in the journey that can only be messy. Most of us do not get into difficulty on our own. There are reasons that we suffer from depression and anxiety, and those reasons tend to involve extreme stress and traumatic experiences. To recover from that, you need to be in a safer place, and you will have to square up to what happened.

The most common environment for wounding to occur is the domestic one. People are most at risk from violence, abuse, sexual assault and rape from people they know, not from strangers. This is more traumatic to begin with because of the layers of betrayal and broken trust when the people you should have been able to most trust are the ones who harm you. Part of the healing process for many people will involve squaring up to what someone they loved did to them. That is a vicious, painful process to be in.

Abusers encourage their victims to feel responsible for what is happening. This protects the abuser and keeps the victim pliable and cooperative. The mental health damage is massive. It’s further complicated when the victim wants to think the best of their abuser and is easily persuaded to feel that they are to blame so that they can keep believing that their partner, or parent or other person they care about, is actually a good person. To heal from that experience requires re-visiting it and re-framing it and that is a hard process.

While you’re in there, the difference between breakdown and breakthrough can be almost impossible to spot. Some healing is impossible without some breaking down of the old self and the old worldview first. Again, this is a desperately hard thing to go through, and while in the thick of it, there may be no sense that this is a breakthrough process moving you towards healing. Not everyone hits this in the context of having professional support to get through it.

Breaking down always creates the possibility for a breakthrough of some sort. But, that’s not an obligation to heal. Without support, resources, time and care, a breakdown can be just another hellish period of misery. Having the space to transform breakdown into breakthrough is a privilege issue. For the person who is still in the harmful situation, healing isn’t an option.

But, it can be some comfort to know that when you hit a period of breakdown, it might lead to breakthrough. There is every chance its happening because you are able to step away from the past and start re-building. It is not an easy choice to go with this process rather than fighting it, but sometimes, surrendering really pays off.

I will likely be coming back to this in the not too dim and distant future to talk in more detail about how recent breakdown has allowed me to make some specific breakthroughs.

Dealing with fear

I’ve been dealing with fear for years. Here are some things I’ve learned that may be useful. If you want more insights, I’ve written a lot of notes from the journey – search for blogs here about anxiety.

Your fear is not unreasonable. You’ve lived through something, or the threat of something that has taught you to be afraid. If the world seems hostile, dangerous and unkind, this is because you have found it to be so. Your fear is rational. If you are in a dangerous situation, treating your fear like it’s an irrational response will keep you in danger – often an issue in abusive relationships. If you are not in danger, historical fear can make your life hell.

It is really important to notice the fear. If it becomes normal, this may take more effort. Accelerated heart rate, overwhelming feelings of threat, futility, powerlessness and everything going wrong are not normal. If you’re feeling those a lot, or all the time, you are feeling fear.

Risk assess. Sit down, breathe slowly and look at what you’re afraid of. Ask yourself how real the threats are, and try and go through them as slowly and carefully as you can. If you find you are in real danger, seek help. Take it seriously. If the danger is based on past experience, question it. Don’t let it take over. It is reasonable to be afraid if you have been through trauma, but it doesn’t mean you are always in danger.

Breathing slowly and deeply is often a good way to control fear in the body. Moving is good. I find I have to literally run away sometimes to control the flight responses. I get out and walk. If you freeze up with fear, try and coax yourself into some small, gentle movement. Flight, fight and freeze responses are all signs that fear has taken you over.

It is really important to eat well, get exercise, rest and sleep, and to do things that comfort you. Alcohol doesn’t really help. Many of us find herbal interventions like St Johns Wort, chamomile, valerian and lavender to be helpful, and you’re in control of those, which helps. If your body is run down, exhausted or malnourished it has good reasons to be afraid, and that won’t help.

This is really hard stuff to deal with on your own. You are not obliged to deal with it on your own. Fear may tell you no one will help you, or that they will use it as an opportunity to hold power over you. Find the people who also live with anxiety and work with them. It is easier to dismantle this sort of stuff as part of a team. It is easier to think about other people’s experiences than your own. By sharing your experiences, you can help someone else. By supporting each other we can make safe spaces to defend ourselves from fear.

You didn’t get here by yourself. Fear will tell you that people will judge you and think less of you if you need help. This isn’t always true. Some people will do this, but not everyone, and the people worth having in your life are the friends and allies who will not kick you when you are down. Get out as far as you can from situations where people will use your vulnerabilities to hurt you. Find the people you can trust. Even if it’s just some random blogger like me. You aren’t alone, and you can get the fear under control and have some, or all of your life back.

Intuition or Anxiety?

We know all kinds of things with our bodies. Even if you aren’t drawn to more magical explanations, there are some really rational things to take into account about what we know and where in our bodies we know it. We all absorb far more information than we can consciously process, and there’s increasing evidence to suggest that how and where we store that knowledge is complicated and not just a brain issue. Our bodies know things.

The anxious body has learned fear, and that fear colours what we learn. This can make it challenging to know what to do with body knowledge. How do you tell between fear and intuition? Anxiety will tell you that something awful is going to happen. The worse the anxiety is, the worse the expectations and the higher frequency at which they arrive. Suffering from anxiety made me really uneasy about trusting the idea of intuition. When fear makes you see dangers that don’t exist, it’s hard to trust any other body wisdom.

What I’ve discovered recently is that different kinds of knowing sit in my body in different ways. Anxiety sits in the muscles between my ribs, and is a heavy weight in my stomach. Anything I feel in those locations is most likely to be anxiety, not intuition.

However, if I experience something at a bone deep level, that’s intuition, and well worth taking seriously. It’s difficult to describe, but it is a feeling that is deeper in me – and has weight and substance, and solidity. Bone wisdom is substantial, and persists over time frames. The fear that lives in my muscles is tremulous and shifting, inconsistent and nearer the surface. All it has for me is the potential to be afraid, whereas what I feel in my bones includes all of the options available to a person.

I’ve been working on identifying and trusting my intuition for some months now. I’m trying to rebuild my trust in other ways of knowing, and in my own senses and at the same time to be less in thrall to my own anxiety. I’m making good progress. I’ve done some really dramatic things based on what I’ve known in my bones. Those things have gone so well, and what I’ve known has repeatedly proved true, which helps me build trust in my own intuition. What I know in my bones is worth knowing. If it’s just a fluttering, sickly surface thing then I don’t have to invest in it.

When you lose your mental health

It isn’t always obvious that you are in crisis. From inside a mental health crisis, what you are doing and feeling may well make perfect sense. Lockdown may make people more vulnerable to suffering the consequences of not knowing you are in trouble,  so I thought I’d talk about a few things to watch for, in yourself, and anyone you’re interacting with.

Paranoia is a likely consequence of poor mental health. It’s a form of anxiety, and right now it will be made worse by lack of contact with people who can offer alternatives, plus the vast array of conspiracy theories out there. If you are in a country whose government is handling the pandemic badly and people are dying because of that, then some amount of paranoia may be appropriate and reasonable. When it takes over your entire thought process, then you are in trouble, but this is hard to spot from the inside.

Catastrophising is another common consequence of failing mental health. You focus on the worst possible outcomes and start to see them as likely, or inevitable. Again this may seem wholly realistic. If you’re starting to feel like lockdown will never end, that you and everyone you have ever loved is bound to die, then you are catastrophising. It is a persuasive line of thought, but that doesn’t make it a definite truth.

Overwhelming futility – this one comes from depression, but it can pair up easily with paranoia and catastrophising. It feels like there is no point doing anything. At the extreme end, there seems to be no point getting out of bed, or eating. This is likely to turn up with, and be reinforced by overwhelming feels of exhaustion and leadenness.

The best solution I have found when dealing with this in better times, was to have people you can trust to hear you, not make you feel ridiculous and help you get things back in proportion. However, there is no knowing right now who else might be driven around the bend by what they are experiencing. If we dig in with these experiences together, we can amplify them for each other. It’s difficult to keep things in proportion when the world is such a mess. It’s hard to be certain that any kind of hope or optimism is rational at all. But in terms of surviving and being able to function, some kind of hope is essential. Hope as a deliberately chosen path, despite all the evidence that does not support it, might be the most insane and most healthy thing you can go for right now.

The other thing to always consider with failing mental health, is to focus on the practical and physical things. Look after your body, eat good food, rest, get exercise, get some sun if you can and some tree time. It gives your mind something productive to focus on and you can make a difference to yourself and those around you with a focus on bodily wellbeing. Focus on surviving and staying able to function. Hopefully there is a far side to all this where healing will be possible and we can rebuild ourselves. Human minds are fragile and damage easily, but are also resilient and can recover.

Struggling with mental health

I wrote this in the middle of the night recently, crying, unable to sleep, overwhelmed with panic and despair. The first version went up on Facebook. I’m mostly trying to out a brave face onto my online presence – easy to hide behind a screen. But, I doubt I’m the only one feeling this way and I think it needs talking about.

TW – Suicide issues.

Like a lot of people, I was suffering from anxiety and depression before the virus. There has never been much help available for us, and now there will be less.

Many of us have lost key things that were keeping us going. We may express hurt over that online – the loss of the gym, the dance class, the pub time, the live music – we may not be being super selfish when we express distress. We may be talking about the things that helped us stay alive. Depression also kills people. Knocking people back for expressing distress or difficult, really doesn’t help.

It’s really hard for me, reading people saying ‘stay in’ and ‘don’t see anyone’ with a clear message that anything other than total isolation makes you a terrible person. I’m really struggling with feeling like a terrible person, I expect I’m not alone. I don’t do much going out at the moment, and I’m being careful and have been for weeks. But I’m also not sleeping, and crying a lot, and terrified of being trapped in this flat and what that would do to my already poor mental health.

Tom has some serious anxiety issues and for him, being trapped in a building is deeply problematic.

So maybe don’t share the memes about how all you have to do is sit on the couch, it isn’t that hard. For some of us, isolation could well be a death sentence.

And yes, lots of anxiety about how selfish I am in not wanting to end up suicidal. I’ve been through periods of wanting to kill myself before now, I’m fighting not to go back there. I’m seeing people online hoping the virus will take them quickly because they’ve already lost the will to live. I see the same thoughts creeping in with me. ‘Selfish’ can be something of a trigger term for me and again I suspect I’m not alone. I think people who kill themselves often do so because they think its the best thing they can do for the people around them. What else is there, if the things you do to try and stay alive are deemed selfish?

I know many of you are new to massive anxiety, and you just want everyone else to be more sensible so you and your loved ones are safe. Of course you want that. But some of us were only ever holding on by our fingertips, and now things are worse. Please, when you go online to vent your fear, consider how it might sound to someone who is having a mental breakdown. Someone – for example – for whom going outside for a run, or a walk is the one tool they have left to manage their failing mental health.

Your suicidal friend probably won’t tell you how they feel because that’s part of how this illness plays out. They won’t ask for help, especially not if what they need is time with another human being. You won’t know who is in trouble, most likely. Yes, isolation saves lives. Kindness also saves lives, and your depressed friends need to know that their lives matter too and that they are not failing as human beings for wanting or needing things that are difficult at the moment.