Advocacy

Today I am thinking about advocacy within mental health. 

Not championing awareness of mental health, but actual advocacy, you know, support with financial management, support attending appointments, support getting through life essentially.

I am a 26 year old, single female living in Liverpool. I live near to my family, but not in the family home.

My parents, well they are there for me as much as they can be, but they have their own problems and those of my sister to deal with too. 

Besides my parents, society presumes that I can survive on my own.

Problems I have with independent survival:

• I struggle to speak on the phone (communication disorder, Aspergers)
• I get so stressed over aspects of life I avoid them (I avoid opening post, I am in massive debt and the stress makes me very ill, it can trigger a depressive phase)
• I struggle with waiting rooms (I avoided my GP for 18 months as I couldn't face the waiting room, making myself more ill in the process)
• I am not very capable completing forms (if they don't follow my train of thought or the questions are not completely relevant it sends me into meltdown)

These are just the 'tip of the iceberg' when it comes to problems. I am struggling with day to day existence, but there seems to be no system in place for support.

I feel like I fall outside all of the brackets; I can walk, so I don't need a carer, I can read and write, so I don't need a carer, I have full command over all four limbs, so I don't need a carer....

However, I neglect my personal hygiene, because of lack of motivation/other mental issues... I avoid dealing with my debts as they are too anxiety provoking... I struggle maintaining my house, I spend so long making lists of what to do that I don't do any of it, I can't touch dishes that have been left in the sink, I can't wear gloves due to textural issues... I lack motivation to cook, so either starve or binge (really good recovery for a bulimic don't you think?)

But these issues don't meet with the 'need for support'. I, of course, have the physical ability to turn on a tap to run a bath, so I don't qualify for support...

Why is my mental inability any less of a disability than a physical one. The end result is that neither myself or a physically incapable person would be able to achieve the end result, but the lack of willingness to support suggests that they think that I am choosing not to be able to do these things.

I intend to continue self-advocating to the best of my abilities, but I feel on the cusp of admitting defeat, turning up at the psychological hospital and requesting admission... It may be the only way to get some intense support.

Mental Health Support - the postcode lottery...

This week, my mission has been to try to find a charity offering support to fill in the (rather large) gaps in my care and support left by the NHS...

This, I thought, would make life a bit easier. I would be able to construct a support network around myself, and hopefully this would enable me to try to find a way forward, a way out of this deep, dark hole I find myself in.

The first thing I should point out is that there are literally thousands of charities based in the UK with an aim to supporting mental health issues. 'That's great', I thought, as surely with this many charities, I would surely find at least one suitable for me...

The things I decided that I may wish to seek assistance with are:

• Advocacy
• Emotional Support
• Financial Support

Eyes. Wide. Open

Firstly, within fifteen minutes of searching, something became immediately obvious... Charities CAN discriminate.

I suppose in realistic terms every charity has to have a strict criteria for who they support. I do understand that otherwise they would not last long at all, they would be doling out support and funds so quickly that they would run out of resources in days.

Let's start from the basics, I looked at what I consider to be the 'big' charities. I looked for charities who have support available in Merseyside. I found one, CALM. 

You'd think, well there you go, CALM is the one for you. But, you'd be wrong. CALM will only support men. I am outside their demographic, the search goes on...

** So far - gender goes against me **

I used a charity search to look for smaller, local charities. Surely, somewhere in here I must fit into somebody's criteria... After all, I have a variety of diagnoses and I am a human citizen of the area, right?

The next charity I came across seemed to suit me perfectly. A charity supporting people in my area who have a diagnosis of Bipolar disorder. Perfect!! No... Sadly I don't qualify as I am heterosexual :( and this charity works with people in the LGBT community.

** So far - gender and sexuality go against me **

But that's ok, for here is a charity with similar criteria, no mention of sexuality, and it says it's for females. BINGO!!! Oh wait, no, I am not in the specified Ethnic community...

** So far - gender, sexuality and race go against me **

By this point I am giving up hope, when suddenly I see it. A Liverpool based charity, supporting women with Mental Health disorders, by this point I nearly cried with joy... I clicked upon the link, the headquarters is based in Liverpool City Centre... Could this be the one??? Oh, no... Although it is based in Liverpool, it supports people from Knowsley and Sefton only!!!!!!!!

** That's it, I literally fit in nobody's criteria **

I should stress here, I have NO PROBLEM with charities cherry picking who they support at all, but I have a problem that this leaves people with all the same problems with NOBODY to help them :(

What next??

Do I use a family member's address, pretend I live in Knowsley?? Do I claim to be homosexual?? 

Or, do I raise awareness myself. I have started a twitter campaign, @EndingStigma, to raise awareness of the issues I, like many others, encounter daily. Along with this blog, I hope to go some way to make a difference.

One outcome has been decided already; once I am well enough I intend to either join a charity and bring them to my area, or start a charity of my own, after all, I can't be the only white, heterosexual, female scouser who needs access to this type of support, right??

Mental Health and Employment

Mental health in the workplace… 

need I say any more??? What a catastrophe it is!

I have been off work for three extended periods in the last three years. Each time has been due to a breakdown of my mental health. Occasionally, a physical health issue has cropped up whilst I’ve been off too, but on the whole it’s all about my messed up brain.

The first two times I was treated ambivalently. Work showed no interest in my health. They got in touch every time sick note was nearly due up asking ‘Are you returning to work this time or what?’ No hint of concern as to whether I was actually recovering, but just a concern that they were one body down when it came to planning the rota.

This changes when I am finally signed as fit to work. The first time I go in to see them to arrange my return to work it’s as though they’ve been very concerned about me. They state that they have a variety of strategies to help me.  This starts well (phased return to work, but using my holiday entitlement), but within days has fizzled away.

The epitome of support I received from my workplace was: They placed my job description in front of me and asked me to tick any criteria that I may struggle with in my job. This was then taken, filed and never spoken of again. A mention of occupational health was bandied about, but nothing constructive.

The cycle then started again; my batteries are recharged, I cope for a while. Then cracks appear; I can’t cope with the hours being worked, I can’t cope with customers moaning about trivial nonsense, I get anxious about speaking with customers,  I get anxious about even getting ready for work…

And now??

So, at the moment I am off work long term sick. Fortunately I now have a new manager who seems to be more interested in supporting me. He has been in touch regularly, just with a text asking ‘Are you ok, feeling any better, any news from the psychiatrist?’ etc.

Ok, I know that he is getting pressure from above, ‘Make sure you find out when she is returning to work.’ ‘Get her to come in for a progress meeting’ but I genuinely believe that he has my best interests, if not at heart, then in consideration.

When I went for the progress meeting, it was illuminating. Every question on the form was practically unanswerable in regards to mental health. Some examples are:

‘When will you be well enough to return to work?’

Well, if I had a broken leg, I could probably give a timescale. 

If I had pneumonia I could probably give you an idea based upon the antibiotics I have left. 

With mental health, how am I supposed to have an idea for myself, never mind one to document officially??

• Each time I see my psychiatrist my medicine is changed. 
• Each time my medicine is changed it takes 4-6 weeks to know what the difference is going to be. 
• Each time a difference is made, it then needs assessing as to how this impacts upon my life.

Also, I have Bipolar disorder. Some days I am so high that I feel so well, I can’t possibly be ill. On a day like that I am more than well enough to work, although I may take some risks. However the next day I could be incapable of getting out of bed. Whilst my mood is so wildly fluctuating, how am I supposed to know when I’ll be well enough to commit to working.

What can we do to help?

Well, you can stop making me feel bad for being unable to sell insurance to every customer. I work in an area where most people don’t insure their car, which is a legal requirement. If they won’t pay compulsory car insurance, how am I to convince them to pay optional insurance on a mobile phone?? And when I don’t manage to pull off a miracle, you threaten my job.

You can make it so my job is that, a job. A PART TIME RETAIL JOB. I am sick to death of taking work home with me; stress over missing targets haunts my sleep. In a career such as teaching or medicine, you’d expect to take the job home with you… selling mobile phones part time, well frankly that should be left at the door.

You can stop expecting that although my contract is 16 hours, I will work 7 day weeks, opening to closing.

You can make reasonable adjustments to the workplace. In our south-facing, glass walled shop you can apply window tints, so as I face a chance of making it through the day without acquiring a migraine. You can provide maintenance to sort out the kitchen. It is dirty as hell, full of insect life and has a toilet in the middle of it, and provokes my anxiety to the point where I barely eat and drink (excellent for a recovering bulimic, providing an excuse to avoid eating).

You can reconsider your actions after my last absence. I was off with a mental breakdown and midway through had to have a lifesaving operation leaving me without most of my abdomen. You decided that this was worthy of a ‘first written warning’ of absence. This is discrimination at its highest level. Discipline those off sporadically with a hangover/convenient headache by all means, but when someone is genuinely ill don’t treat them like a naughty employee who should have been in work regardless of the situation.

You can fulfil the promise made after my first absence, and actually get me help from occupational health. Maybe they can facilitate a way for me to work. Otherwise, I can sense that I will be made unemployed, and how is a girl with a sickness record like mine ever going to find employment again.

Stop asking ‘So?? When are you coming back to work???’. Take it as given that once I’m well enough I shall let you know. 

So what next??

Each and every person you employ comes with a 25% risk of becoming a mental health sufferer. In today's society where there is ever increasing awareness of mental health issues, surely this should be travelling up the hierarchy. 

Mental Health issues shouldn't make you unemployable. However, the lack of support from my employer has contributed to my extended and recurrent leave of absence. I have a degree. At present I am too ill to use this degree. However, I am trying my hardest to continue to be in employment.

The sad thing is, it's likely to be a case of leaving employment to spend time making me better. Why should a part time retail job contribute to making my health worse??? I don't get paid enough for that.....

Aspergers and Mental Health

From speaking in discussion groups and forums with other Aspies, two things have become clear:

1. 1.   There seems to be a high prevalence of Mental Health (MH) disorders amongst Aspies.
2. 2.   People ignore MH issues in Aspie's, as though it is impossible to have both.

First thing to note is, Asperger Syndrome (AS) is a neurobiological disorder. It is NOT a mental health disorder. Some say it is a faulty wiring of the brain, although I prefer to think of it as being different wiring; it's not faulty, it's alternative!!

This alternative wiring is the source of much debate. Can somebody with a difference in their brain possibly suffer an illness of the ‘normal’ brain?

The equivalent to this question is ‘How can both a white person and a black person have eczema?’… ie It is a LUDICROUS question. The make-up of skin is the same no matter the colour, it just contains more or less melanin. Similarly, all human brains are the same; just some have differences in make-up.

Recent research shows that there is a visible difference in the brain of someone suffering from certain mental issues, such as depression. In certain types of depression the hypothalamus in the brain is undersized. The research suggests that this is self-fuelling. The brain produces less ‘happy hormone’ (both dopamine and serotonin count here) which causes the part of the brain which produces them (the hypothalamus) to shrink, thus reducing the person’s ability to create these happy chemicals.

How could this link to an Autism Spectrum Disorder?

AS causes a wide range of issues, from social difficulties to sensory processing difficulties. It does not itself cause a dopamine or seratonin deficiency. 

However, the difficulties brought about by, for example, social isolation can act as catalysts for MH difficulties. 

Imagine, you're out with people you consider friends, they are all having fun, having many conversations over each other, and laughing at private jokes.

As an Aspie, you're wanting to have fun too, but you're overwhelmed by the new member of the group; Who are they? Why do we know them? Am I allowed to speak to them? Do they like me? 

You cannot keep up with the conversations that are happening... In fact, there's that much noise that you cannot tell one from the other, so you're smiling at people completely unaware of what they are saying... Is a smile appropriate? What if they're explaining how a family member died?? Have they been cheated on by their partner? Are they mocking me and I'm joining in the laughter?  You don't understand what they're laughing about; Why is that funny?? They keep saying spoon?? What's so funny about a piece of cutlery?

In short, instead of having a relaxing time socialising, you spend your time stressing out. You feel like you're there but in a bubble. You can see everything going on, they can see you, but you have a barrier, you can't quite engage with the group. The longer this continues the more it compounds itself. This over time can develop into a stress related illness, and furthermore the lack of stimulation of serotonin and dopamine can cause clinical depression... So tell me again how Aspie's cannot get a mental health problem???

There are other mental illnesses that this social stress can cause… for example, Anxiety… Wouldn’t you be anxious if you didn’t understand any of the social cues around you??

In short, whilst AS can make you more susceptible to mental illness, it does not cause it, and it is not to be written off as ‘inevitable’. It is as treatable as in a neurotypical person. Please remember this.

Stop the Stigma

Today I read an alarming statistic:

If you add up all the people in the UK suffering from: 

• asthma
• diabetes
• kidney disease
• breast cancer, and
• prostate cancer

then you get a number notably fewer than those in the UK who suffer with a mental health illness.

How is it, then, that mental health is more common than these 'common' ailments, but is treated like such a taboo subject?

It is obvious that there must be a large crossover, and many of those suffering with, for example, diabetes may also have a mental health disorder. This could either be triggered by, or separate from, their physical condition.

Answer me this, if someone with diabetes says, 

'Oh, my blood sugar is low' 

do you think/say:

1. 'It's you own fault', 
2. 'Maybe if you smiled a bit more, your sugars wouldn't act up', or 
3. 'Have you any glucose tablets you can take? Is there anything I can do?'

Chances are that you'd think/say the last option. After all, why would they want their blood sugar to be wrong? If a smile fixed it, wouldn't they walk around like the 'Colgate' man to keep themselves on the straight and narrow.

Now, consider that this diabetic is suffering from clinical depression: not 'I'm a bit fed up today', but full on immobilising, inhibiting, devastating depression. 

Now let's revisit the questions; 

If someone with diabetes and depression says, 

'Oh, my mood is low' 

do you think/say: 

1. 'It's you own fault', 
2. 'Maybe if you smiled a bit more your mood wouldn't act up'... or 
3. 'Have you taken your medication? Is there anything I can do?'

The statement and responses are almost identical, but in my experience, peoples' reactions flip almost to the polar opposite.

Suddenly, the illness becomes a direct result of the sufferers actions. There is a presumption that if only they'd smile then, hey presto!, they'd be well again! 

And as for 'It's your own fault', would you say that to a breast cancer sufferer?? 'It's your own fault, as you have breasts'... 'Maybe if you just smiled the tumours will shrivel and die'... 

NO YOU WOULD NOT, you would know that this opinion is, to put it politely, codswallop...

What gives anyone the right to judge someone with a mental health issue as having caused their own illness...

The woman with anxiety, caused by years of social oppression and isolation, did she bring it all on herself??

The girl with post-traumatic stress disorder, caused by being raped, was it her fault???

The lady with bulimia, caused by constant bullying, is it her fault???

You know her, the one with bipolar disorder, caused by a chemical problem in her brain, did she change the chemicals???

That woman with an Autistic Spectrum Disorder, did she choose for her brain to be wired differently???

No, no, no, NO!!!!!!!!!!

A sufferer of a mental health issue has been stricken by it just as much as anybody with a physical ailment.

It seems to me that the only difference between a physical or mental impairment is how the sufferers are treated by society.

Society decided long ago that just because you can't see an illness, it mustn't exist. This is a bit rich coming from a society dictated by beliefs in a supreme being. You know, a god, that you can't see... 

Maybe this is the answer. Preach all you can about your mental health issues; tell anybody who will listen, and anybody who won't too! Don't let society convince you that you should be ashamed, and NEVER apologise for your illness.

Sorry this became a bit of a soapbox rant, but I stand by everything I said... And by the way, the descriptions of sufferers earlier (in green).... They are all me...

Aspergers and mental health disorders....

I've been doing some social networking (mostly Facebook) and I've joined some groups for Aspies...

Finally I feel I have contact with some people who understand me, and have similar 'quirks' to me. 

It got me thinking though, that the more Aspies I experience, the more I see a direct link between Aspies and other mental health disorders.

On a personal note, I have a few mental health issues...

• ?Bipolar disorder - My psychiatrist is currently diagnosing me with this, they have decided I have a type of bipolar disorder, but not which variant I have yet.
• Depression - I have held this diagnosis for about 6 years, but it may become replaced by bipolar diagnosis once it is settled upon.
• Bulimia Nervosa - I have had daily food struggles for as long as I can remember. This has been compounded by my Aspie textural issues... If I had been able to binge on onions and lettuce I may have avoided the weight gain, hence avoiding the vicious cycle of Bulimia. 
• Obsessive Compulsive Disorder - I'm not your average 'I must clean everywhere' OCD sufferer. My Obsessions revolve around perfectionism and catastrophising. I will spend 48 hours making a list to do, and no time doing. I can't make do without the list, because if I do something in the wrong order I will have horrendous thoughts of the consequences of missing something (ie, something will happen to a family member). I also catastrophise a lot... During my last meltdown, my mum took me for a drive and to my favourite chip shop for a treat. She left me in the car to go to the chip shop for me, and I spent the entire time locking the car doors in case somebody tried to get in the car, I spent the entire time (probably just 5 minutes, but it felt much longer) convinced that she was going to get run over crossing the road, and it would be all my fault for being unwell and wanting that particular chippy and being the reason my mum was out of the house.
• Anxiety - self explanatory really...

I have other issues too, but not that I believe to be linked to Aspergers...

This has become a bit of  a one way rant about my issues, but I the more that I speak to other Aspies the more I see that there seems to be a high proportion of other Aspies with similar issues... I wonder if we meet the 1 in 4 statistic?? It feels like 3 in 4 Aspies from my experience... I wonder if, with this seeming prevelance, anybody is researching why this may be???

Personal Independence Payment and Mental Health

I applied in July last year for Personal Independence Payment (PIP). This is the replacement benefit in the UK for Disability Living Allowance (DLA).

I received a letter in response to this, informing me that I scored 0 out of 12 for having a disability, and that frankly they thought I didn't deserve the benefit...

I have no qualms with the system; they can't have everyone on this payment, but the reasons they gave me are frankly unrealistic...

This change in benefit has created a new system which completely disregards mental health issues.  Under DLA there was recognition for questions such as 'Can you wash yourself?'. DLA gave the option of I cannot due to lack of motivation which is my problem. Yes I can physically pick up a wipe and clean my face, and yes I do know how to run a bath and sit in it, but due to my mental health I am not able to bath myself. 

Not bath yourself?? Really?? Yes really. There are a couple of reasons for this; firstly I can barely summon the motivation to leave the couch, never mind get up, run a bath, wait for it, get in the bath, clean myself, wash my hair, get out, dry myself, sort out my hair, clean the bathroom. Secondly, I don't feel safe to get in the bath. I feel as though if my voices started telling me to in the bath, I'd put myself beneath the water and  drown myself. 

By my knowledge, I know that I am unable to clean myself unassisted; my mum has had to bathe me, and I've had 4 baths in 6 months. However, because I have the physical capability to turn a tap I am considered 'Able to bathe myself' under this new system.

I am ill enough that I am being considered for inpatient hospital care. I hear voices, and have visual hallucinations. Last time I got a bath, I saw and felt leeches crawling all over me and had to jump out and run away. 

Mental Health is treated as a 'made up' sickness. I just wish that the people who make these rules had to spend one day in my head. I would love to be well, to be independent and to be free of myself, but it's not something you can just 'snap out' of. 

A very close friend of mine is wheelchair bound... She is very independent, in everything except being able to walk. She receives help from the state. I do not begrudge her this, she is very deserving of it. However, I am held in a mental prison, dependent upon my poor mum for everything; hospital appointments, financial management, midnight visits to stop my panic attack.

I am just clinging on to the faint glimmer of hope that is the appeal. 

I have Asperger Syndrome, Severe Recurrent Depression, ?Bipolar disorder, ?Schizophrenia, Post Traumatic Stress Disorder, Bulimia Nervosa, Anxiety, Panic Disorder... and that's just my mental health. Obviously though, all my illness is in my head... so all those diagnoses count for nothing...

I work, and I have to do overtime as I have no other income. This is making my illness worse. I know I'm getting worse as I'm starting to research methods of suicide again. I don't consider it suicide though, I consider it euthanasia. When my psychiatrist, other doctors, family and friends ask if I feel suicidal I always say no. I'm not exactly lying, I just consider it differently to them. 

If a dog is ill for a long time getting no joy from life, a vet will put it down. Why can't a human do the same for itself?? We're animals at the end of the day, and should be able to choose our method and circumstance of death. 

Hopefully, one day I will be well enough to lobby and petition government, making them sit up and take notice. That is, if I get the help to survive that long... Each and every day is a battle, and sooner or later I'm preparing to wave a white flag and throw in the towel. 

Sorry, got to go... head too noisy, can't think...