I am aware of mental health, I’m aware of Eating disorders, I’m aware of Autism and Tourette’s and Fibromyalgia, I’m even aware of Goths (yes there is a Goth awareness day) and I’m very aware of how tired of awareness days I am. At the moment there is (rightfully) a lot of focus on the mental health affects of the pandemic and lockdown, however those of us that struggled before feel like we’ve been yelling about social isolation and the 9 to 5 lifestyle being detrimental to our mental health for years but no one listened.
The thing about gaining awareness is its meaningless, how do you quantify awareness? How do you evidence it? What exactly is the aim?. People with mental health problems are aware of helplines and time to talk campaigns, we’ve heard all the talk to someone messages but who do we talk to? And what happens when talking isn’t enough? Or when no one listens?.
We’ve tried talking, we’ve asked for and begged for help, we’ve called the helplines, the crisis lines, we’ve been to a&e, walked until our shoes wore out, coloured in our colouring books, we’ve drank more tea than we can count and we’ve had a fucking bath. We do all the things we’re told because otherwise we get labelled as difficult or told we don’t really want help; since the pandemic started the already stretched services are at breaking point. There is no one to talk to.
The messages are well meaning but there is limit to what helplines can do and even being in contact with services doesn’t guarantee support. In the last two years three people I know have taken their lives and all three were known to services, being told to talk didn’t help them, awareness couldn’t save them, they had all tried talking, they had all tried reaching out.
In less than two weeks it’ll be two years since Juliette died.
This is why I don’t like awareness campaings they’re meaningless, hollow gestures with no real purpose or motive that don’t address the real problems or try to change the systematic problems with mental health services.
Please don’t tell me to reach out or talk or ask for help, I’ve done it for so long and I’m tired now.
Guess who’s back? Back again, dinos back, please like and share.
So it’s been a while, I’ve had to do lots of writing for work recently which hasn’t left me with much brain capacity to write for enjoyment, but I’m back and return with a rant.
This week is Mental Health Awareness Week and the theme is stress which is ironic as stress and work are the reasons I haven’t blogged recently. It often feels like a week can’t go by without there being some kind of awareness day/ week/ month so far this year we’ve had time to talk day, self injury awareness day, university mental health day, eating disorders awareness week and no doubt many others. This month is borderline personality disorder awareness month normally I’d write something about these or use them as a springboard to write about a related subject but this time I’m writing about other peoples way of promoting these awareness days.
I know that I often use these awareness days and campaigns to promote my blog and that’s not what I have an issue with but people using it to promote their illness or compete over who is the illest especially on social media. Mental health problems and chronic illness already have so much stigma attached and there are so many misconceptions around them, the biggest areas of stigma I’ve found are within the medical system from Drs and medical staff I’ve had several occasions where I’ve been poorly treated and discriminated against due to my mental health and especially self harm. So why when there is already stigma attached do people within the mental health and chronic illness “communities” claim to be “raising awareness” by glorifying their illness or posting things that just add to the misconceptions?
Posting pictures of your self harm as part of an awareness day isn’t going to reduce stigma, posting pictures of your face scratched up or countless pictures of your starved body is shocking and attention grabbing but ultimately adds to the idea that self harm is purely graphic and bloody, that personality disorders are all about self harm or that eating disorders are about being thin and fragile, mental illness is complex but it’s not pretty and we don’t need more images of fragile, delicate white girls or bloody and bruised bodies in the name of raising awareness. If I had £1 for every time a health professional made a throw away comment about people with personality disorders or treated someone’s self harm in an unprofessional or even cruel way I would be a wealthy Dino.
We need to change how we raise awareness and avoid glorifying mental health problems as a way to show the reality of living with a mental health issue because the reality isn’t just what’s visible and just showing that side of things not only gives a very narrow view but also undermines people who don’t experience mental illness this way, it’s a broad spectrum and everyone is different and we all experience things, everyone has different symptoms and lifestyles, mental illness is invisible not everyone has scars (at least not physical ones) and that should be the message we send that mental health problems aren’t uncommon and they’re increasing and you can’t always tell just by looking at someone.
*mentions medications, doses and side effects and self harm
Let’s talk about medication; the world and his wife and their depressed friend seem to have an option on the subject, the internet is full of memes about going for a walk in a forest and you know the Daily Mail will have something to say on the matter but the reality isn’t just popping a pill and everything is better it’s much more boring, frustrating and often unpleasant. I’ve been on and off medication almost half my life and I’ve been on some form of medication consistently for around 10 years. I’ve tried almost all the common antidepressants – citalopram, venlafaxine (made me throw up so much), sertraline (no effect but made me sick when I took myself off it), citalopram again (worked well then stopped working), seroxat – the scary one from panorama (worked well then stopped working, made me very mental coming off it), duloxetine (still on this the most effective and long lasting though I’m now on the maximum dose) I’ve also been on and am still on an antipsychotic quetiapine.
I loved quetiapine it helped me sleep, it lowered my anxiety and evened out those wonderful BPD mood swings it was great until I decided maybe I didn’t need it anymore that I was tired of being tired, I wasn’t in love with it anymore but it didn’t want to let me go. When I first reduced my dose the withdrawal was horrendous I remember the nausea that made me late for college because moving made me want to throw up, I lay on my sofa and cried for a day before breaking 6 months self harm free and phoning my care coordinator begging for diazepam instead they gave me promethazine this took me to three types of medication.
After this I increased the dose twice and things were ok until I tried to leave quetiapine again and it let anxiety and depression came back in, at this point I was just starting my new job and was also suicidal from the medication withdrawal, this then led to an increase of my antidepressant duloxetine now up to the maximum dose, the anxiety was unbearable so propanolol a beta blocker was added; 3 little pink pills a day.
A referral back to the mental health service and a medication review with a psychiatrist i’d met through my work with commissioning groups and we decided to try lamotragine an anti epileptic but not until I’d had a blood test to check my liver and kidney function oh and watch out for a rash because this can suppress your white blood cells.
My view on medication is that I’m neither for or against it, for some it’s a life saver and others it’s poison that dulls the emotions and sedates people into compliance but I do think people need to be more aware of what they’re taking and how it could affect them. Medication and the side effects are one of the reasons people with enduring mental health problems die on average 20 years earlier than the general population many of the health initiatives around weight loss and stopping smoking aren’t helpful to people who’s mediation has ground their metabolism to a halt or has increased the effects of nicotine on the brain and that’s not even looking at the social side of eating or smoking amongst people with mental health problems.
Medication has and continues to help me in combination with the therapy I’ve had it helps me do my job which in turn benefits my mental health, had I known more about the side effects before I was put on an antipsychotic maybe I’d have decided not to go on it but even if I’d made the same choice at least I’d have had all the information needed to make an informed decision.
There’s still a lot of stigma around being on medication and those memes about taking a walk in a forest really don’t help, there’s no shame in being on medication so please take your meds.
I know I’ve talked about cost before and I do understand the pressures placed on the NHS however this isn’t just about the actual finances but the attitudes towards money being spent on mental health care. Last year when the mental health trust that covers my area was considering putting in a crisis café I went to a consultation which was for service users, mental health professionals, third sector workers and generally anyone that might be interested or might consider bidding on to run the service.
Someone else attending the event worked out how much it would cost per person per night to attend a crisis café based on the figures from the model that the trust were basing it on and asked whether this was good value for money. This frustrated me for so many reasons one of them being why are we looking whether someone’s life is a cost effective use of funds and another was that the alternative to me is self harm and a&e.
It costs the NHS money to treat me – stitches and anaesthetic, dressings, bandages, Doctors and nurses time and psych liaison, if I get an ambulance to take me there because of blood loss or not feeling physically able to get there alone it costs the health service money and although I don’t know the exact figures (and I’m not sure I’d want to as it increases the guilt) but I’m sure it’s a lot more than the cost of attending a crisis café. I’ve seen people say that if you do it to yourself you shouldn’t expect the NHS to pay to fix it and while I can think of a few things I’d like to these people I also think once you start going down the route of denying people treatment if they’re responsible for the cause I think it’s a slippery slope towards finding blame for almost anything (didn’t notice your laces were undone sorry your fault, broke your leg skiing should have stayed at home).
Prevention is almost always better then cure and while I’m under no illusion that crisis cafés or any other crisis support would mean that no one went to a&e; I know it wouldn’t mean I never self harm but it would be an alternative. There’s a lot of talk at the moment especially with an election coming up about mental health and in particular the mental health of young people. I volunteer on a youth mental health project and highly encourage mental health education and advice in schools but it doesn’t help the adults or children already experiencing mental health difficulties, it looks good on paper and even a liberal cynic like me can almost believe that’s not the only motive but it’s almost as if they want to write off those already in need of help and start again.
If we want people to thrive rather than just survive there needs to be more support, more money and more collaboration between the NHS and the third sector (actually collaboration not just expecting the third sector to pick up the pieces), the crisis concordat I’m part of has been cancelled twice in a row, it only meets every three months and the last one was in October there now won’t be another one until August. People with mental health problems deserve better and deserve more, too many people are left with nothing or sent home from a&e at 3 am with no way to get home, at this rate we cannot survive let alone thrive.
Is there anyone who isn’t aware of mental health problems? Survive or thrive? Sink or swim?
Much like my life and my mental health the way I approach these awareness days/ weeks/ months are how I feel about can vary. This is partly down to whether I’m representing the organisation I volunteer for or another mental health group or whether I’m just representing myself. Having started this blog at the beginning of the year having awareness events can be a prompt to write and I always try to be genuine, I want to present the reality – my reality of having a mind that is often not mentally healthy but the reality is it’s often not very interesting.
I often feel like contradiction and the idea of survive or thrive fits that nicely because I can be one or the other or both, although I want to be seen for the things I do at mind or with mental health awareness rather than the things I do to myself I also want to fight the illusion that I create. The term high functioning is thrown around a lot in various communities whether it be neurodiversity, learning disability or mental health it’s meant to be a compliment yet I’d happily drop the term into the nearest active volcano; I’m a (mostly) high functioning borderline I volunteer, I live alone, I’m in a relationship and while none of these are bad things they tend to be used to overlook the other side of things and the part the wants to sabotage all this because the more you do the less help you get.
Black and white thinking is something frequently mentioned with BPD but it’s not as simple as they make out my thinking can be very black and white in specific areas but in others I can see in technicolour. There’s a lot of mental push and pull especially when it comes to “recovery” I’m not a fan of the recovery model some days I want to move on from all this and thrive others I miss and crave the self destruction some days I go round in circles between the two and it’s times like this that being high functioning and self aware is actually painful because I can see what I’m doing to myself and others but there is no pull in the world strong enough to stop me from self destruction that can override the self hate and self sabotage.
I found myself arguing with someone the other day trying to break this myth that I’m high functioning and can manage without support that I’m ok that they only see one side of and it’s not the side that gets kicked out of a&e at 3am or that feels like the internal rage could burn up the entire world if it was fully released. So many things are subjective and thriving is one of them, as much as I welcome the idea of mental health awareness I’d like an awareness of the lack of services of the people who turn up to an appointment to find their care coordinator has left, of the people who feel that they’ve been chucked onto the mental health scrapheap because they’re not recovered and the high functioning people who are really just treading water and desperate to keep their head above water.