Too Many Trigger Warnings To Count

I have been thinking about how hard it is to find the words to talk to people about mental health. I say this as a woman who has no shortage of words and still struggles.

Two years ago, when my son lost his best friend, we talked to the school about what support they could offer our son. For weeks, they refused to countenance that he needed any help, despite what we were telling them. In one meeting, after we had finished begging, the person we were talking to said in a breezy tone: ‘Well I saw him coming into school this morning and he seemed fine.’ My husband, who had completely had enough by then said: ‘Did you say that about his friend, too?’ To which there was a shocked silence and unspoken, but deafening nonetheless, the words: ‘there was no need for that.’

Except that there was. There was every need.

All the words we had used up to that point had done nothing at all. No sympathy. No help. No support. No understanding. Everything was pushed back to us as if we were lying. As if the thing we knew was wrong with our son wasn’t wrong. What was wrong, apparently, was his inability to shrug off his friend’s death by playing more football, or having a good cry and moving on. What he needed was to get his head down and have a stronger work ethic. What was actually wrong was that his work was suffering and his attendance was down. It was implied, none too subtly, that we were using his friend’s death as an excuse for our son’s truanting. We were told that if he didn’t stop, social services would have to get involved.

That’s what happened when we asked for help. That’s what people need to understand when someone dies and everyone asks why they didn’t say anything. You can say what you like, but people don’t always want to hear it.

My own experience as both a person who deals with their own complex mental health and a person who has cared for other people with mental health needs is that the notion of ‘help’ is a terrific idea. Sadly it so often remains a terrific idea. Most of the time it manifests as a performative, self-congratulatory pat on the back for the person talking. What I have come to realise is that they want to talk about it. They don’t want me to talk about it.

In the abstract, mental health care is great. It’s instagrammable. It’s something you can put in your bio. You can make the words, ‘be kind,’ do all kinds of heavy lifting without actually having to be kind. In reality people don’t want to hear it. It’s too close to the bone, or it’s inconvenient, it’s boring and unsexy. Or they won’t help but don’t want to be forced to admit it. It’s uncomfortable to actually be a person that won’t help when you can comfortably believe that you’re the person who will as long as it remains speculative.

Down on the ground, nobody wants to be wandering through no man’s land with me, crouching in a fox hole while the bombs burst. I get it. I don’t want to either. It’s just that this is where I live sometimes.

If the performative help takes place at work, there may be a policy. This has not been created to actually help the person struggling, but is all about ticking boxes, providing insurance and not getting sued. There may be, as with my son’s school, a counselling service. We were offered half an hour of the school counsellor’s time, once a fortnight on the understanding that she might be too busy with other kids to see him. She almost always was. She was under resourced, under skilled and ill equipped to help him. She couldn’t even remember his friend’s name. Mostly she wanted to be sure, as did everyone else he saw that we didn’t pay for, that he wasn’t going to kill himself on her watch, because that would be messy.

This may sound brutal. That’s because it is. In the last two years, the question we have been asked the most about our son is how likely we think it is that he will kill himself. It is absolutely tragic that the world of mental health care involves so little care. Imagine a squad of doctors policing the Beachy Head of mental health, waiting to actively shove people back from the edge. Once they’re a safe enough distance away, the job is done. Until next time.

My experience is that you will be asked if you need help, but there is always, both privately and publicly, the very real understanding that you are supposed to say ‘no.’ If you do make the mistake of saying ‘yes’, speed is of the essence. Everyone wants it over as quickly as possible.

I understand this. Christ alive, nobody understands this more than me. Mental health is a bastard. An unrelenting, 24/7, cunning, unsettling, exhausting bastard. It’s terrible for people experiencing it. It’s terrible for people caring for those people, professionally and personally. It is literally and metaphorically no fucking fun at all. It’s the worst of all things, being deeply repetitive and boring whilst also being terrifying.

If you’ve never suffered with your mental health, the closest I can come to describing it is like being in labour. You’re in pain, you’re exhausted and you don’t have many options available to solve the problem that aren’t longwinded or awful. After twelve hours you’re bored witless but scared out of your mind and can’t think of anything else, even though by this time you’d just quite like to go to sleep and forget the whole thing. You have very few resources to entertain anyone else but somehow, even though it’s supposed to be all about you, people keep bothering you with their stuff. You start to cry because you thought someone was going to help you. Then when someone does come to help you, they look like they’re going to murder you but you’re too tired to resist them. At that point, death seems like a good way out, but nobody will let you go. Dealing with mental health is a lot like that, minus the baby and all the balloons at the end.

Me? I get double bubble. Try caring for someone with shocking mental health problems when you, yourself have shocking mental health problems. It’s a laugh riot. The fall out from two years of that, plus a whole host of other shit, is why I am where I am right now.

This has been said before, but it bears repeating. People who have physical health problems have an easier ride of it, not because they suffer less, but because the general public understands a broken leg in a way they don’t understand a broken mind. You don’t have to keep reminding people you have a broken leg in the way you do if you need your mental health taking into account on a daily basis.

Nobody likes a whinger, even me, which makes it very, very difficult to have to keep saying: ‘Excuse me, but I am having a panic attack right now.’ ‘Sorry to bother you, but when I said I couldn’t do that, I really meant it.’ Over. And. Over. And. Over. It is also humiliating, difficult to articulate and makes you hugely vulnerable. If you have to say these things, there is no guarantee that you will get what you need. Sometimes it makes things worse.

There is a lot of talk about mental health, but not a lot of understanding and even less practical help. If you’re in a car crash and break multiple bones, people understand it’s going to take you a long while to heal. If you’ve had a stroke, ditto. If you’re having a nervous breakdown it feels like you’ve had a car crash in the middle of having a stroke most of the time, but people get bored and wonder why you’re not better yet because you had a fortnight’s mental health leave. WHAT THE FUCK IS WRONG WITH YOU? Is what they’re actually saying when they tilt their head on one side in that sympathetic robin sort of way. You look the same as you always did. Now act the same.

One of the hardest things for me is that the onus for getting help falls on me. I am expected to find the words to explain what’s going on. I am expected to know what kind of help I want. I am expected to turn up for appointments and be articulate and explain things I barely understand myself. If I am not perceived to ‘engage’ with the process to the satisfaction of others, I get discharged. When I am in the thick of things, I sometimes don’t know if I want a sandwich, let alone what kind of therapeutic help I require. It’s a lot.

I went back to see the GP for a medication review at the end of last week. The woman I saw is nice. I’ve seen her before. She makes the time to listen and she tries to do what she can to help with the resources available. Unfortunately, we are running out of road, medically speaking.

My relationship with doctors is hard, because much like my son’s school, when I say words, they don’t believe me. They are the clever ones and unless they can evidence what I say, they won’t play nicely. If I put my foot down, my notes say that I am a difficult woman who is not engaging with the experts. If I don’t engage, I get discharged one way or another.

Engaging this time meant that even though I said I didn’t tolerate oestrogen, nobody believed me until I took oestrogen and it made me really poorly. Now my notes have been updated so nobody gives me oestrogen in future. Except this was supposed to have been in my notes already.

Engaging meant that even though I said I have a terrible time with smear tests and find them painful and invasive, nobody wrote it up in my notes until I proved it by going for another traumatic smear test that failed. Even so, the doctor has decided it would be good if I tried again with a different nurse next week. She made notes that said I needed extra support. I wondered why those notes were only being written now. I said yes because I couldn’t deal with discussing it further without crying. I am going to cancel it. It’s too hard right now to do anything else.

This GP surgery was supposed to be better. In so many ways they are. I can get appointments. They follow up. They are not rude or dismissive and they listen. That’s all good, but if it isn’t backed up with belief, what’s the point? As I watched her taking notes last week, I realised that although they listened, they didn’t believe me until they had proved it to their satisfaction. Unfortunately, in order to do that, I ended up going through hell. It’s not even that I expected them to take me at my word. I have notes trailing round after me, inches thick. What is the point of documenting all this if the only way I am to be believed is through suffering?

And this is the physical stuff. This is the stuff I can show them, as long as I pay the price of putting myself in harm’s way. This is the easy stuff. And it’s still impossibly hard. And it all makes me crazy. And that’s actually what I went for in the first place.

I only registered with this GP so that I could ask for help with my mental health. I realise in hindsight, that because they weren’t mean I took my eye off the ball. What I got was a double dose of my anti-depressants and a place on a waiting list. Then they moved on to smear tests and oestrogen and blood pressure, which is all the things they wanted to look at. When I went back last week and we discussed the fact that I’d had to go back to the low dose of anti-depressants after a terrible reaction to the higher dosage, there was no further discussion of what I might need or want. I’m on the same medication I came in with and a different list. I’d just come to the top of the list for therapy in Leicester. Now I’m at the bottom of the list here and more crazy than I was when I first asked for help.

When I first saw her, she asked me how likely I was to kill myself. Every time I’ve filled out a form, or talked to a service provider about my mental health since then, they have asked me. They’re still policing Beachy Head. It’s swarming with desperate teenagers and middle aged women.

I’m not a suicide risk. It’s not for me. I have my own demons. I’m all about the living hell. It means that any help I require is going to take longer. Living with demons is non urgent. I could go back to the GP and ask for different medication but to be honest, given what I've lived through in the past few weeks, I’m done with that for now.

Now, what is left to me is finding ways to talk to people so that they believe me. I’m lucky. I’ve got some good people around me who do a bang up job of helping me find my way through this darkness. Private therapy might also be forthcoming, given that the wheels are coming off somewhat faster than any of us would like. It’s not a decision to be made lightly, but it is possible with some financial juggling.

I started writing this countless times and deleted my attempts. I thought about how bored you, the reader might be. I worried. I know I’ve written words like these countless times. I closed my laptop, just like I closed my mouth over the words I wanted to say to the doctor. And I realised that was the problem. Even if I don’t have the right words. Even if I have too many words. Even if I repeat myself. Even if I bore myself and everyone else rigid in the process. Even if I don’t make sense. I need to stop censoring myself in the face of my suffering or I will never get better.