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.
If you can’t here expecting a review of a lush bathbomb then sorry to disappoint you this is a rant about mental health services, maybe try Lulu or Jen
I am not a frequent flyer, I don’t have air miles I haven’t been on a plane in years and the last time I went abroad was to Edinburgh by train. Despite this I and other in a similar are labelled frequent flyers or regular attenders (this is meant to be the better term) because we find ourselves in situations where our mental health has got to a point when we need support and intervention often requiring medical attention as a result of harming ourselves.
Self harm isn’t something people do for fun or because they enjoy being in a&e it’s because emotions become overwhelming (and this is a very simplified explanation of a complex issue) and as I’ve written before the treatment once you’re at a&e is often not pleasant or equal to the treatment of people going in for accidental injuries with long waits in loud and busy waiting areas and psych liaison who at most may give you a leaflet and discharge you at 4am with no way of getting home.
It’ll be no surprise that this latest rant is inspired by a crisis concordat meeting this morning, two hours of frustration at having to bite my tongue in frustration at the language used and throwaway comments about people with personality disorders and the triggering content in the suicide prevention information listing the age groups and sex of people who ended their life and details of methods chosen again separated by sex.
Sometimes I look at the people sitting around the same table as me and wonder how they can be so oblivious to the blatantly obvious, do they really not see the link between the high numbers of people in Richmond who come into contact with the street triage team and the above average number of people detained under section 136 of the mental health act and the complete lack of crisis services in the borough? Are they actually surprised that people who are distressed or in crisis don’t want to travel an hour or more to an area they may not know to get support? And may not have the means to do so? It really isn’t rocket science or a difficult connection to make, I don’t exactly consider myself the sharpest tool in the box yet I can see it so why can’t they?
Aside from Mind since I’ve been a part of the crisis concordat (around 2 years now) and the outcome based commissioning program (coming up for 8 months) only one person has actually asked me about my experiences of a&e and the treatment I receive it still seems like a radical idea to most of the people involved to actually listen to someone who’s been in the very situation they’re talking about. Despite feeling like i’m banging my head against a wall (thanks Steph) and frequently coming away wondering if being there serves any purpose I still keep going if only to play my own version of crisis bingo.
There’s not a mental health charity or campaign that doesn’t talk about stigma around mental health issues but these campaigns as important as they are don’t address stigma within the mental health community or internalised stigma.
Mental health services are generally seen as the Cinderella service of the NHS and personality disorders services especially so, people with borderline personality disorder are often seen as attention seekers, over dramatic and untreatable (the name personality disorder doesn’t help), people often find if they say they have depression or post traumatic stress disorder or bipolar they receive better treatment especially in a&e.
Trauma is a complex issue and most people agree that there is a lot of overlap in mental health issues that come as a result of trauma, complex post traumatic stress disorder is generally less stigmatised especially within the medical world, some people challenge or avoid being diagnosed with BPD because of the stigma surrounding it and barriers it presents whether it’s an appropriate diagnosis or not. There is a general attitude that everything someone with BPD does is for attention that suicide isn’t serious and they don’t really want to end their life, some people even believe that personality disorder diagnosis especially BPD should be scrapped and replace with CPTSD.
I don’t claim to be the authority on all things mental health this blog slightly more coherent than the general stream of consciousness and thoughts rattling around my head and I really try to only focus on issues I have experience of as it’s not my place to talk about a diagnosis I don’t have but so many of the problems with people’s attitude to BPD in particular are around the behaviours that come with the condition or the unpredictable moods and changes some of which do cross over with other issues but I generally seen as BPD problems. If we removed the diagnosis people would still self harm, they’d still have problems with mood changes and relationships; if we transfer those issues to another label would we not just be transferring the stigma?
Of course I can understand why people wouldn’t want a stigmatising disgnosis but when people seem horrified at the suggestion that their diagnosis being BPD not bipolar or other people suggesting someone clearly has BPD based on their actions or behaviour it really doesn’t help those of us that are diagnosed with it and doesn’t help to change the attitudes to mental health problems when even within our own community there’s so much division and stigma.
Being diagnosed with BPD was about as surprising to me as someone telling me I had blue eyes it was very much a bears shit in woods and the pope is catholic situation. In the 8 or so years since I was told I had BPD I’ve had many different feelings about it from relief and validation to anger and hatred to shame but although I wouldn’t necessarily say I’m proud of it I am open about my diagnosis and don’t hide it. I do believe that there should be more clarity around the various overlapping mental health problems and issues that stem from abuse and trauma but if there are going to be changes then we need to find ways of removing the problems faced by people with BPD and other conditions with heavy stigma rather than carrying them over to another condition.
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.