Tag: stigma

Managing

I don’t have an issue with taking the easier option, I’m not going to take the harder way of doing something if an easier option is available, why struggle to add something up if there’s a calculator available? Why carry a suitcase if it has wheels? Why use a tin opener if there’s a ring pull?

But when it comes to being disabled i tend to manage before going for the easier option or the option involving using aids or adaptions I’m more hesitant to do what’s easiest. Some of this is about other people’s perceptions or questions, when I first started using a mobility aid I was so anxious about what people would say because I was going from having an invisible disability to a visible one and suddenly people became aware of the accommodations I needed (not completely but more than they had) you can thank social anxiety for me not asking for accommodations before or even after I still prefer things like badges or lanyards to talk for me.

My partrner recently moved and the new flat has a bath with a shower attached but there are no handles or grab rails; at home my bath has handles and a grab rail and that’s a struggle. I put grippy duck stickers in the bath I told myself it was fine and I could manage but then I caved and got a shower seat of course I still questioned whether I needed it because I was managing without.

A white slatted shower stool in a white bathtub
The latest accessory

On Monday I used my shower stool and it really made things easier, I could spend longer in the shower, I used up less energy, was less anxious about falling over and I was able to wash my legs and feet without the risk of falling.

Managing isn’t everything, I can manage to walk unaided but it’s harder, causes more pain and fatigue and I’m more likely to fall over, I could manage at cons and outdoor events without using my crutches but it would be exhausting, my hips would hurt so much I wouldn’t be able to walk the next day and I wouldn’t be able to manage without a lot more help than I already get especially on wet or uneven ground (shout-out to my service Teffy).

Sometimes it’s not enough to just manage and if there is a way to make things easier don’t settle for managing.

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It’s personal

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.

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Part of the problem?

Dinos back
A green backgroud with pink dinosaur cartoon carrying a black brefcase and pink walking stick. The words dinos back are at the top in black

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.

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Ghosts of attachment past

PP hug tight
A rabbit hugging a hedgehog with the words “one day, someone is going to hug you so tight, all your broken pieces will go right back together” by paper panda

I was reading Amy’s mystery illness which prompted me to write this. A favorite person when you have a mental health problem like BPD isn’t always a friend, don’t get me wrong my best friend is the person I talk to daily, see as often as possible, share everything with (yes everything) she’s even been dubbed my wife but in the context of BPD and attachment she’s not my favorite person.

I know I’ve talked about attachment before and it’s likely I’ll talk about it again, it’s something I struggle with, being self aware isn’t enough to break the pattern it’s one thing knowing I have a type and knowing I get attached to certain people (mainly older women often those in the care profession) it’s another thing knowing how to manage those feelings especially when relationships end.

In MBT they encourage you to check things out to test your perceptions with reality, the black and white thinking that comes with BPD and the certainty that the way you think and feel is accurate often isn’t but the problem is sometimes it isn’t possible to check things out and test the feelings which leaves you questioning reality. There are 4 people in particular that I’ve had these strong attachments with, all of them were professionals and all of them left (I want to say left me even though I know that’s not true).

Building new relationships is hard it feels like a betrayal to get attached to someone else it’s also a challenge when dynamics and boundaries change and figuring out new relationships with different people especially people who aren’t my “type” it’s both refreshing and confusing. Changes in my life can be hard to when they affect relationships when moving from a volunteer to staff it changes the relationships with people around me.

People leaving is always hard and loss is painful but the difficulty I find is being left with questions or wondering whether they even cared at all, I don’t want to play the BPD or mental health card but it’s hard when you struggle with attachment issues and you feel led on that someone promised you something and made you feel as though you mattered but didn’t actually as ad they said they would. As I don’t know who reads this blog I am being intentionally vague here but the attachment to a favourite person someone you’ve relied on and told some of the most personal things about you and your life is to me something far more intense than a friendship even with someone close who is trusted completely where there is no risk in disclosing personal information. The loss is still there the right feeling in my chest, wishing for contact now joined but anger and frustration, I don’t want to miss them but I do.

One of my former favourite people a mental health professional said things that left me feel completely invalided and life my issues were insignificant, had it been someone else it may have been unpleasant but due to the relationship we’d had I felt as if I was losing my mind, again questioning whether they’d ever cared, I was angry and hurt and resented others for the reaction they got from this person. Leaving the service they work in and no longer attending the place I saw her has helped to an extent.

This post has been a bit disjointed and I’m not quite sure how to end it, It’s still hard to talk about attachment and feels very cliched to be attached to these older women, the mother figures, I find it embarrassing though writing it is less uncomfortable than saying it verbally. I hope that the more I talk about it or write about it the easier it will become and the less shame I feel and that in reading my posts other might feel less ashamed by their struggles too, writing about uncomfortable topics is a way of challenging myself and being open and vulnerable it’s also something very relevant at the moment struggling with letting my guard down and opening up, it would be nice if in time it wasn’t so hard to talk about and my attachments become less intense.

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Rocket Science

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

IMG_5726
A blue rocket shaped bath bomb made by Lush cosmetics

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.

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BoPo or BoNo (body positivity and disability)

IMG_2457
A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove
Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

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Money money money

A paper collage of an open mouth screaming

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.

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End the stigma 

A large rabbit comforting a small rabbit with the words “life is tough, my dear but so are you” beneath it

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.

Image credit Louise Firchau – paper panda 

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Time to Talk Day 2017

ttd2

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.

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