I write best when I’m hurting…

TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.

I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.

I’m hurting right now and haven’t posted in almost a month. What’s happened?

I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).

For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.

The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.

My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.

And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?

Advertisements

Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

What does “depressed” look like?

People often say things to me that imply that they can’t quite manage to believe that I have depression. Sometimes they outright say that I don’t have depression or say “But how can you have depression?”. Sometimes people react with shock or suspicion or by immediately assuming that I have very mild depression. More recently, I’ve noticed that when I talk about my depression, people reply as if I’m talking about something that happened in the past. They ask “What was it like?” “How did you cope?” and even “How did you get over it?” instead of “What IS it like?” and “How DO you cope?” and “Do you think you’ll one day get over it?”
I talked to some other people with chronic mental health problems and this weird tense-slip thing turned out to be a common experience.

I have had depression for over a decade. It’s been a major part of my life since childhood and if you think on that a minute you’ll have to realise that almost everyone who knows me in real life has only known me with depression. I’ve been depressed longer than some of my siblings have been alive. And I’m still depressed now. People often find this information hard to process because, well, they’ve got this image of depression in their heads and most of the time I don’t look like that. Depressed people are supposed to, say, cry a lot. Or repeatedly say “Oh I’m so depressed”. Or have visible physical scars or a very public crisis in which either a kind stranger, a good friend or men in white coats have to step in to rescue them from their own self-hatred. I don’t look like that. I look, well, normal.

Sometimes depression looks like me.

Sometimes depression isn’t so much crying and crisis and self-hatred as it is a near-insurmountable inability to motivate myself to do or enjoy anything. Without significant support from other people, I don’t eat or wash or get dressed or go out. I’m not sure exactly what it is I actually do but getting out of bed, going to bed and everything in between are really, really difficult for me to do – not in and of themselves but because I have very little motivation. I literally bribe myself, coax myself and if need be force myself to do these normal every day tasks that are required for Staying Alive.

Sometimes depression involves having difficulty concentrating on things and paying attention. So I find myself really, really wanting to understand what I’m reading, watching or hearing and just.. not doing. Repeatedly.

Sometimes depression isn’t so much not liking myself as it is thinking that I am an amazing, wonderful person… but it ultimately doesn’t matter because I’m never going to achieve much if I can’t even keep myself fed and dressed. I know I’m awesome but I feel unable to do anything much to show it. I feel like I don’t contribute enough to my friendships and relationships. I feel like I neglect my activism and my writing. I wonder why anyone likes me when I could do so, so much more to deserve it.

Sometimes depression looks like avoidance.  I stopped seeing many of my friends a few years ago. I still love them dearly but am terrified of trying to reconnect in case they resent the distance I allowed to grow between us. I love my younger siblings but am scared of being a disappointment as a big brother because I disappear when things get bad and only reappear when I’m fairly sure I won’t somehow mess things up. My inaction causes the very thing I’m frightened of to happen and I sort of understand it but I still can’t find my way past the fear and hurt to reach out to those I love.

Other times, it can look like recklessness. I impulse buy things – usually small cheap items of food or jewellery to make myself feel better. I can afford to right now but I still find myself doing it when I really shouldn’t. They make me feel better for a while but are usually followed by guilt. I feel bad for daring to want to feel good.

Sometimes my depression even looks like success. When I was at my worst with my depression, I rarely cried in public but I did write two novels and hundreds of poems, pass nine GCSEs and four A Levels and share a rich and deep friendship and imaginary world with some wonderful people.

My depression waxes and wanes but it’s never really gone (for a few glorious months once I thought it had and then I had a sudden and unexpected breakdown). It mostly manifests as I’ve written before as unwanted thoughts and even dialogue inside my head telling me that I’m bad and worthless and exhausting me so I can’t always remember that i disagree.

I think I’m actually pretty amazing. My friends and partners and family think so too. I’m struggling right now but I tend not to look like I’m struggling; because most of it goes on inside my head, because I have adequate support to keep me fed and clean and dressed, because I push on and do difficult things like talking to people and leaving the house because I want to be a good friend, a good partner, a good brother.

This is what depression can look like. It can look like a charming, smiling, sociable, intelligent young man with lots of friends and people who love him. It can look exactly like someone “twitter famous”, a well-known and well-liked blogger. It can look exactly like a clean, well-dressed, knowledgeable acquaintance at a party.
Depression can look exactly like someone like me.

Which is to say, depression can look like anyone. It’s not something you can see.

The Obligatory Year-In-Review Post

TW: mental illness, disability benefits

It would be far, far too easy for me to claim that “nothing happened” this last year. My ill health forced me to take time out of my degree and to spend pretty much the entire year chasing up disability related benefits. It’s been a hard year.

I think, though, it has taught me a lot about myself. Mainly that I’m not as helpless as I often feel. I mean, who found me a new house to move into? Who got Adult Social Care to assess me? Who sorted out my claims for Personal Independence Payments, Employment Support Allowance *and* Housing Benefit? I did.
Who decided it was necessary to take even more time out my degree and organised for that to happen? I did.
Who is living in a house which contains no other members of his family for the first time in years *and* actually making that work? I am.

And whilst I’ve been doing all that, I’ve managed to maintain a social life, two romantic relationships and to keep politically active.
That’s not nothing.

With no partner living in the same city as me, I’ve discovered to my surprise that people like me in my own right, not just as one of a pair. I’ve also discovered that I can hold my own in activist circles when I thought I needed someone to back me up. I’m glad I’ve learned (finally) that I usually do know what I’m talking about and people want to listen to what I think.

I started this blog in 2013. It’s the first blog I’ve had under my own name – which is oddly freeing as I’m not trying to hide from my stalkers any more. I don’t worry about them reading this because I refuse to be ashamed of anything I write here. Yes, I am trans and bisexual and disabled. I claim benefits and I may not ever be well enough for full time work. I refuse to be ashamed of that.
I have things to say and I’m going to say them.

My new year was Rosh Hashanah and I thought up hopes and wishes for the next year then. Right now, I don’t know what 2014 will hold for me. I’m hoping to finish my degree, have a break from running around after benefits, spend more time with my two wonderful partners and to, well, stay alive as best I can.

When I was younger, I didn’t expect to live to be 25. I couldn’t see a future for myself that lasted that long without me taking my own life. This year I want to make it to and past my 25th birthday. This year I want to prove my younger self wrong and show him that even mentally ill disabled queer trans people like me get to have lives full of love and happiness that he couldn’t have even imagined.
It’s not much of an ambition but it is mine.

2013 (and 2012 before it too) was not an easy year for me. There’s been tears and mental health crises. But there’s also been joy and triumph and solidarity. There’s been love and hope. Things have changed massively from how I thought my life would be but I know I am making the most I possibly can with what I have.
2014 will bring it’s own challenges and difficulties, no doubt. But I’ve learned this year both that I can take on challenges myself successfully and that I don’t have to.

Happy New Year. Especially to the woman who’s loved me and wanted me throughout all the hard stuff and to the man who made the leap from being my friend to being my partner: I love you both and I look forward to continuing to do so for as long as I possibly can ❤

How I’ve Been – What Applying For Benefits Is Like

TW: Frank discussion of worsening mental illness, ATOS

Hello readers,

It’s been a little quiet around here for a while and if you follow me on twitter (I’m @autistliam) you might have an idea why. I’ve spent the last few months trying to find out what is happening with a claim for disability benefits I made over 6 months ago, whilst at the same time trying to fill in the forms and provide evidence for two more benefits I’m eligible for *and* manage my social care *and* get to all the doctor and hospital appointments I have to go to *and*… well, and have a life. I have friends and family and lovers to spend time with, books to read, films to see…

And because of the horrific bureaucracy I’ve found myself having to grapple with, I’ve had to do all that whilst living on less than £25 a week, perpetually wondering whether this is the week I’ll hear good news or whether I’ll have to ask my Uni for yet another crisis loan just to keep myself fed. It turned out that this week was finally the week that I have been awarded PIP – Enhanced Rate Care, back dated to cover most of the time I’ve spent living on as little as possible. It’s a relief to finally have it (even though I need to appeal the decision NOT to award me any Mobility payments) but it doesn’t really make up for what I’ve been put through.

It’s been a whole year since I started filling out a DLA form that took me five months to complete, working around my postgraduate degree and around treatment for my yet-to-be-diagnosed chronic illness. I sent that form just ahead of the deadline for the PIP change over but the DWP decided that I would be assessed for PIP anyway – for their convenience, not mine. They sent me a new form and just four weeks to fill it in. Overtaken by stress and despair, I considered killing myself and started self-harming after not doing so for months, saw my GP and was put onto antidepressants and considered quitting my degree but thankfully opted instead to take a year out. That was in May, I’ve been signed off as too ill to work since then but as I never had a job in the first place my sicknotes don’t get me any money. I managed, somehow, to fill in and return the PIP form – complete with over 12000 words of additional information and several sheets of evidence, within the four weeks they asked for. They never acknowledged receiving the form. I next heard something in July, when I was asked to attend an assessment with ATOS on the fifth of August. I arranged for my partner to be available to take me to the assessment and stay with me. I survived the misleading questions and attempts to catch me out in an over two hour long assessment – during which I had a small meltdown, was asked simple arithmetic questions, had my sight in both eyes tested after explaining that I can only use one at once and was asked to explain what triggers my PTSD and why and how often I harm myself and how often I consider killing myself.
After that, I heard nothing for a month. I had no money coming in and had to ask my Uni to loan me a month’s rent in order to have anywhere to live. My advisor phoned the DWP. ATOS had not sent them a report about my assessment yet. Try again next week.
That was early September. Since then, I’ve been trying again next week *every week*. The Uni has given me two more loans to keep me housed and fed. ATOS took seven weeks to get my assessment report to the DWP. They didn’t tell me they’d received it. It took almost another month before they looked at it and made a decision. They didn’t tell me about that either. I found out today by having my advisor phone them to ask them whether the £1600 that had appeared in my account was actually for me. Apparently it is.

The last year hasn’t quite been Hell (I’ve seen Hell and it’s much worse) but the precarity of always being told that things will be okay soon with no clear idea of when “soon” will be is certainly torture. My mental health has been affected and I have needed to start antidepressants, needed to ask friends to help keep me alive by making sure I eat or by sitting with me when I’m struggling to keep myself safe. I suddenly have some money and an income and can afford to eat better and to buy things but so long on less than £25 a week has made me forget what I even wanted.
I suspect it was to replace the clothes that I have worn through. Perhaps it was to eat in my campus bar every now and then or maybe to buy more than one drink at the pub. I need to replace my passport and haven’t been able to afford to.

Before all this, I was doing an MA and considering volunteering or part time work. Right now, I am doing neither as all my energy goes towards trying to sort out my benefits, social care and health. Being too ill to work is a full time job in itself.

This ordeal has changed me. It’s not been as hard as it would have been if I were not a student, I’m very grateful for help received from University Welfare Services, friends and partners and hundreds of supportive people on twitter. I hope to get my life back on track soon, I’m going back to Uni properly in May and I hope to have my PIP, ESA and Housing Benefit sorted by then. If things are sorted soon, I’ll look into volunteering.

In the meantime, I’ll try to write. I have been so scared to write this, so worried that somehow it would affect the result if I wrote this blog post before getting my first payment.

EDITED TO ADD:
As this blog post is going much further than I ever expected it to, I’d like to clarify some things that I didn’t make wholly clear.
Firstly, PIP is a benefit you can get whether you work or not. The out-of-work benefit for UK disabled people is ESA and I’m currently filling in the form for that and will have to have *another* ATOS assessment in the next three months for that.
Secondly, the people who told us repeatedly to “try again next week” were *DWP and ATOS staff*. They told my advisor every week that I’d get a decision the next week – for over two months.
Thirdly, without my advisor at the Uni phoning them for me I would *never have heard anything* from the DWP between August and now. And I would have no money to afford to phone or write to them either.
Finally, I just want to repeat that I have had fantastic support from my Uni, my friends, my partners and my doctors. Other people *will* be facing this alone and we need to find ways to find them and help them.

Apparently, it’s World Mental Health Day…

…and if you’ve read my blog before you’ll know by now that I have several mental health conditions. Sometimes I describe myself as “mentally ill” or “crazy”, sometimes I call my collections of symptoms “illness” or “problems” or “difficulties”, other times “conditions”. Whether I’m “ill” or not, what I’ve had to learn to live with is the fact that my mental health conditions aren’t going to go away. They can be treated, yes, managed, yes but not ever really “cured” if cured means “Not experiencing symptoms again” rather than “Knowing how to fairly quickly deal with symptoms as and when they appear and how to prevent symptoms becoming worse”. Rather than ceasing to have these problems, I just have to learn how to live with them, how to work with my brain instead of always against it and how to treat symptoms promptly to stop them from developing into something more difficult to fix. The way my brain works simply becomes my normality.

Today people are sort-of expected to tell their stories of life with mental health problems in order to “stamp out stigma”. I’m not going to, not just because it’s easy to find other posts on this blog where I have written very frankly about my experiences of life with various mental health conditions. I’m not going to because I don’t believe the approach of telling our stories to convince others of our humanity, to show that we are “just like everyone else” or to show that we are people who deserve compassion, is the best approach or even really a good approach to solving the problems of stigma, prejudice and discrimination facing people with mental health problems. It is *an* approach and one that I have participated in before and will do again but I dislike that it has for many organisations become *the* approach. Because, well, it looks good, it’s easy to arrange and free or low cost. It generates good publicity very easily…
But it also places the onus on people with mental health problems ourselves to solve the problems caused by stigma by making ourselves vulnerable to the very people presumed to hold that stigma in an attempt to change the minds of individual people. This is slow, inefficient and not good for the health or safety of mentally ill people who try to do it – especially as there is some shame attached to not wanting to do it.

People should not feel like they have to risk the possible consequences of stigma and prejudice – which range from social ostracisation, to job loss, to being sectioned – in order to do something about stigma and prejudice.
THESE ARE NOT INDIVIDUALISED PROBLEMS, THEY ARE SYSTEMIC PROBLEMS AND NEED A SYSTEMIC SOLUTION.

Part of that solution can be encouraging people to view those of us with mental health problems as people – as members of their families and communities. But that cannot be the whole of the solution.

So as my part towards building a better world for everyone today, I’d like to leave you links to (UK) organisations you can contact if you’re worried about your own mental health. No worry is too big or too small and they’ll be able to help you find local help.

SANEline

Samaritans

MIND

NHS Direct Mental Health Symptom Checker