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.
One year ago today I started working on the youth wellbeing service, initially to support the volunteers when they delivered workshops and helping with training while someone else did the main day to day running of the service. One the first day he threw me in at the deep end and got me to rewrite one of the workshops, despite not bringing my armbands I managed to avoid drowning and quickly decided I wanted more than just the odd hours supporting the volunteers partly because I liked the extra money but also because I was starting to want more than the things I was doing.
I guess I was lucky to have a manager that was happy to give me more responsibility and delegate more work to me plus he didn’t have the time to do the amount of work the youth service needed on top of running another service 3 days a week. I loved the things I did as a volunteer but I was starting to get bored and after years of stagnating I didn’t want to get stuck again so the more I was given the more I took.
This arrangement was meant to last a couple of months then until Christmas then April. On the 26th of April I had my interview for the service lead position and on April the 27th I was told I’d got the job.
Today I jumped ship and went to work in one of the other offices with a different team, since starting this job I’ve found it hard to be alone in the office all day so I tend to pop up in other places from time to time, I celebrated in a work appropriate was with a boiled sweet which my current manager laughed at me for when I sent her a text telling her (feeling the love) but I might go wild tonight and have something stronger, maybe a bag of haribo 😜
I’m clearly no stranger to sharing my life both online and offline, if I was this blog wouldn’t exist and you wouldn’t be reading this now but offline I’m starting to get tired of sharing my story and talking to people about my history and mental health. I’ve spoken to so many people in different settings from pop up cafes to fundraisers, funding bids for work and over 1000 young people through volunteering on the youth service I now run and although logically I know it’s not true it does feel as though there must be a shortage of people who haven’t heard my story by now.
Today I’m running training with my new volunteers on writing their personal story and although no one is forcing me to I don’t feel like I can avoid telling it again it doesn’t seem fair to ask them to share theirs and me not share mine, I’ve been thinking about it for a couple of weeks and Im still not entirely sure why I’m so against telling it now I think it’s partly that I’m tired of hearing it and then the fear of being judged and the shame of not really having achieved much in my life. I really do enjoy my job and it’s not that I think it doesn’t count but I’m in my 30’s and just getting started in career where most of the people around me are younger than me and more qualified. I don’t feel like an inspiration or someone to look up to, hearing other people’s educational backgrounds and qualifications reminds me of what I don’t have and what I’m not clever enough to ever achieve, maybe this is internalised to an extent but I also know the reality of my experiences in education.
When you’re known for one thing or people see you a certain way it can be hard to break that view no matter how much you change or try to move on you’ll still be seen the same way, I’ve talked about my past so many times as a volunteer and although not in great detail there’s a high chance that I’ll be meeting people in my new role that have heard my story, I don’t hide having mental health problems and it’s not like I even could if I wanted to I’ve made sure of that it’s something I’ll never be able to fully hide but even though it’s my own fault I wish I had a choice.
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.
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.
I had a list of things I wanted to blog about so instead I’m going to write about something completely different which came up few days ago.
I’ve been trying to get more into doing activitiesoutside of volunteering which uses my lived experience of having mental health problems, last week I attended a workshop on Outcomes Based Commissioning (OBC). I’ve learnt that mental health meetings and groups loves acronyms, an alphabet soup of conditions, job roles, legislation and projects.
I’d like to tell you more about exactly what that is but honestly I’m not entirely sure myself. I can tell you that 8 organisations some statutory such as the NHS and some charity are working together to change the delivery of mental health services in the area and somewhere in all this they’re looking for contribution and input from service users, carers and people with lived experience of mental distress.
One of aims from the mental health service is to ensure sustainability and deliver cost effective treatment, I have a couple of issues with this. 1) you cannot guarantee sustainability, you can do your best the make services sustainable but don’t make false promises especially to vulnerable people, 2) cost, now unless you’ve been living under a rock you’ll know that the NHS is chronically underfunded and overstretched; mental health has always been refereed to as the Cinderella service and when the going gets tough the tough gets cutting and mental health is often one of the first areas to feel these cuts.
So what’s the problem with pointing this out or looking to save money? well mental health already comes with a nice big serving of guilt for many people, guilt for putting pressure on loved ones, guilt for not working, guilt for being unreliable and it’s hard not to feel the need to justify the cost of treatment as I wrote in my last post I’ve been told by Drs in a&e to consider how long it took to treat me compared to the time it took me to cut myself, I’ve been questioned on why I called an ambulance despite feeling faint from blood loss. I didn’t choose to have mental health problems, my actions may be my choice but having these issues is something beyond my control.
Having the cost of treatment pointed out or hearing the providers talk about services being cost effective makes people feel guilty for something they can’t help and even puts people off seeking treatment whether that’s for self harm (I know people who will suture or glue themselves) or more long term treatment like psychotherapy or counselling.
The financial situation with the health service is complex but nobody should be made to feel guilty for needing healthcare or social care or feel they don’t deserve the help they need.
It’s time to talk it’s time to change. Today is Time to Talk Day an annual mental health awareness day as part of the Time to Change campaign encouraging people to have conversations about mental health. Talking about my mental health isn’t exactly something I really need encouraging to do, most of the work I do with volunteering for a mental health charity involves using my lived experience whether it’s running peer support groups for adults, youth wellbeing sessions for young people or co-delivering mental health awareness training I’ve spent the past four years talking about myself.
Today I’m writing about something more personal and less general than my overall mental health, I’ve written about my diagnosis of Borderline Personality Disorder and one of the most difficult parts of having BPD is forming healthy relationships. Without going into the details of how and why this is such a problem early childhood experiences are usually one of the causes of BPD and shape future attachments and how we view people. Some people have described BPD as the emotional equivalent of having third degree burns, for people who know me well and know how cynical I am it’ll be no surprise to know that I hate that comparison it is true though that intense emotions and mood swings are certainly an issue and when it comes to relationships and attachment this can be a factor in the way someone with BPD views others.
For me that attachment is often transferred onto people who can’t be what I want or people I can’t have the type of relationship I want with. I guess I almost have a type and it’s always the same kind of people I get attached to, it’s something I find hard to admit to that I find embarrassing to talk about but this is Time to Talk Day so I’m going to talk about it. Inevitably people leave, they move on, find new jobs or retire it happens when the people you get attached to are mental health professionals or employers, people with their own lives and careers. That doesn’t stop it hurting, loss and endings are something I struggle a lot with. There are three people who have been there over the past few years the last five years in particular, two of them were my care coordinators/ individual therapists one left a couple of years ago and one retired in September.
The third is an employer who leaves in two weeks but she’s not just my manager she’s seen me from almost the day I started as a service user who barely spoke to anyone (oh how times change), when I started my training as a peer volunteer to now harassing anyone that will listen to let me have a few minutes to speak at events, she’s not only been a good project manager but supportive when I’ve been struggling or in crisis; on several occasions she’s stayed past her working hours to talk to me when I’ve felt unsafe of wanting to self harm. I’ve cried a few times and no doubt will a few more, it’s painful as endings often are especially when combined with mental health problems but the biggest thing I gained from 2 years of intensive treatment for BPD was being able to talk more about how I feel and today feels like a very fitting time to open up about something difficult and hopefully in time feel less shame around my feelings.