I have written, deleted and rewritten the opening lines of this post so many times I lost count. I have had a few days of severe anxiety and very little sleep, and as part of my efforts to honestly express what I’m feeling I wanted to write something describing my experiences. Verbalising (or in this case typing!) the reality of these experiences is difficult but helpful. The opening lines of this post proved to be the hardest to write because I kept including the phrase ‘living with mental illness’, and every time I wrote it something in me shrank away in a ball of shame and fear. In spite of my advocacy of openness when it comes to sharing experiences of mental health and mental illness, I sometimes really struggle to live by it myself. I worry about how I will be perceived. I worry about not having ‘a real reason’ to justify my experiences of mental illness, even though I know that mental illness sometimes just is, that it doesn’t always have a reason behind it or a specific trigger. I somehow still feel like I should have a reason. And if I don’t, it’s simply another failure in what my brain tells me is a long list of failures.

But I’m here and I’m trying so here goes.

“Anxiety does not mean you are weak. Anxiety forges you. Living with anxiety, turning up and doing stuff with anxiety, takes a strength most will never know. Have anxiety for two decades and you have lived several lifetimes, and have won many invisible wars.”

– Matt Haig

Matt Haig has a wonderful gift for putting into words things which sometimes feel inexpressible. There is a lot about living with mental illness that feels inexpressible. I am still in the process of learning a) that it’s ok – good, even – to verbalise what bouts of mental ill-health feel like and b) how, exactly, to put those experiences into words. So often, the explanations I find myself giving either feel inadequate or melodramatic. The problem with something like anxiety, though, is that the experience itself is melodramatic. There is no calm reasoning with anxiety. There is no downplaying it. (Not whilst it’s happening anyway.) It is sheer, unadulterated fear and panic. For me, that fear and panic is often without any cause at all or with a tiny trigger that, logically, is inconsequential.

It is, quite frankly, exhausting.

My anxiety often manifests itself in a very physical way, sometimes even before I’ve become aware of any anxious thoughts. I become very cold. I shake and tremble. I can feel adrenaline coursing in my veins. I feel nauseated. My head pounds. My stomach roils. I can’t breathe comfortably. It is a very uncomfortable, very visceral experience that can last anywhere from a couple of hours to a couple of weeks, and at whatever point it finally passes I am completely drained – physically and emotionally. It also doesn’t help that it most often strikes at night and either stops me sleeping restfully or stops me sleeping at all. Sleep deprivation doesn’t help matters.

All the time my body is going haywire with these fear induced symptoms, one of two things happens in my brain. I sometimes experience a profound disconnectedness from the world – derealisation – which feels like a sort of silent scream: as though I am suspended frozen in a bubble of chaos, which is invisible to everyone else so they carry on with life and the world spins as normal but I am drowning. To borrow some more of Matt Haig’s words: “To other people, it sometimes seems like nothing at all. You are walking around with your head on fire and no one can see the flames.” I find this a particularly useful metaphor because most of the time I am able to continue ‘walking around’ and function as normal, so anyone watching me or interacting with me, outside my nearest and dearest, probably wouldn’t notice anything was wrong. I have always counted myself lucky to be able to do this because I know for many people anxiety and other mental illness can be completely debilitating. Nevertheless, it is a very surreal experience and not a pleasant one.

The other thing that happens in my brain – and this is the one that usually happens when the panic rises at night with no-one around to see – is that I ping-pong between extreme emotional turmoil, where I am overwhelmed by fear and despair, and extreme rationalisation, where I try to logic it all away, convincing myself there’s nothing to fear. Now that second part might not seem all that bad, but I’m starting to think it is actually the most dangerous part of the experience. Because the rationalisations, which start in fact (you’re safe, this problem is not as big as it feels, these feelings will pass etc.) very quickly turn into accusations of inadequacy, and an internal monologue of self-shaming. If anyone else spoke to me in the way I speak to myself in these moments I would consider it an abusive relationship. If I ever heard anyone speaking to my friends or family the way I speak to myself in these moments I would be angrily leaping to their defence to stop such unnecessary and hateful language being directed at them. And yet whilst I know this, I can’t seem to stop. And it becomes a vicious cycle. I panic, I shame myself for feeling things I don’t think I ‘should’ feel, I berate myself for not being able to ‘just pull it together’, and then I panic more because what if it never ends?

That is a dark place to be.

Something I have recently explored with a counsellor is that my reflex responses at times of high anxiety or panic are either to fight it or try and suppress it (hence the ping-ponging). Neither of these responses is helpful and, in fact, seem to make things worse. The counsellor suggested instead that I try accepting the state and presence of anxiety and sit with it. To acknowledge the feelings and give myself permission to feel them. I know, in my heart of hearts, that this is the step I need to take. That reaching a point of acceptance will be, at the very least, helpful in moving forward. But it is so hard to do. How do you sit with and accept something that every fibre of your being rebels against? Something that feels so wholly uncomfortable, even painful? It’s the anxiety dilemma all over again: when I’m anxious I know that I’m safe but don’t feel that I’m safe and I don’t know how to get from A to B; I know in order to deal with this I need to accept it but I don’t know how to accept it.

It has been a really long journey to get to the place that I’m at now. It’s been twelve years since someone first put a name to what I was living with. I don’t even know how many years I’d been experiencing it before that. Years of anxiety and panic attacks, medication and various counsellors, meditation and mindfulness programmes, some of which has helped, some of which hasn’t. I have to keep reminding myself that I have come a long way. I would never have been able to speak (and write) so openly about these experiences when they first started. One of the things that has helped me most on this journey so far is hearing about other people’s experiences. Knowing I’m not alone in them helps massively. So that’s why I’m sharing my own. Even though it’s uncomfortable to do so. A bit at a time, I’m trying to turn my story from one of despair at the hands of a beast I can’t control to one of hope and acceptance. A tale of my beloved monster and me.

Whatever your own experiences of mental illness and wherever you are in your journey, keep going. It’s tough but you’re really not alone, however much it feels like it.