Dear Justin - Come Walk A Mile In My Shoes

Dear Justin Tomlinson
I noted with interest that during the ESA & PIP debate at Westminster on 30th November that you urged Ministers to observe an assessment which you feel are an "opportunity" for people to get help.
My experience was not that, however I do have to say that I was treated with as much dignity and respect as possible by the assessors who had to subject me to the grilling that these assessments dictate,
However - I write this letter to you as an open invitation to attend my next assessment with me.
But before you do so I would ask that you would take some time to come and walk in my family's shoes on a bad day - so that we are not complete strangers.......

I would ask that you come and take my children age 8 and 11 to school and explain to them why their Mum who loves them dearly cannot physically get herself out of bed to take them.  That would allow my husband to return to some sort of normality with his work life which pays our mortgage and bills currently whilst I am not well enough to work. You could then spend an hour with my husband and listen to how caring for me is impacting upon him and his health and well-being.

I would ask that you come and wipe away the tears that I cry because I spend from 9am-3pm wishing the kids were safe at home with me rather than at school where I am convinced something bad is going to happen to them - and then 3pm-9pm wishing they would go to bed because I am such a wreck that I can't cook them dinner, do their homework or even muster up the energy to converse with them. Come wipe away my 8 year old's tears when he asks me if I am going to die and leave him and all I can do is cry in response.

It would be helpful if you could come and cook for the boys and my husband as I am currently unable to as the very smell of food makes me want to vomit and the medication that I am on to treat my anxiety and depression makes me unsafe in the kitchen.

I would ask that you come and hold my hair whilst I vomit bile from an empty stomach every morning due to the anxiety of having to face another day, quickly followed by the other end evacuating itself due to my IBS/IBD. (Sorry - bit graphic but welcome to my world)

Come and sit with me as I lie on the couch with my car keys in my hand watching the clock for the next train that is due to pass the railway line that I could drive my car onto to end this pain that I feel like I cannot bear for a minute longer.  Help me to stay strong enough to realize that this is not the answer.

Come help me argue every minute of the day and night with the voice in my head that tells me I am a waste of space and that everyone would be better off if I'm dead. Remind me that I WILL get better.

Then I am sure you would be a fantastic help with filling out the forms for DWP,   Come help me as I have to put down on paper my worst days and nights.  Remind me that what I see in-front of me in black and white is an illness - its not me because right now I feel like I am nothing but my illness.

As one of the Ministers so rightly pointed out - this is NOT a spectator sport.  We are being asked to pour our hearts and lives out to a complete stranger whilst we are deeply unwell, and in my case TWICE within 8 weeks.  But......my invitation still stands.

I look forward to hearing from you
A Tired and Frustrated Benefits Claimant

The Benefits System That Prevents Me Recovering...

Dear Nicola Sturgeon, DWP & anyone else who can maybe help

I am writing this because today I am having a bad day.  And the main reason I am having a bad day is because I feel hopeless.  You see, I am currently recovering from a very difficult period of anxiety, depression and panic. (I also live with various other long term health conditions – but they were not taken into account during my recent assessment with yourselves)

When I say very difficult, let me explain that that actually means life threatening.  Yes – I know those are normally words that you hear attached to illnesses such as cancer or heart disease, but let me tell you – mental illness is like cancer of the brain and the heart all rolled into one. 

Mental illness made me believe that my two young children aged 8 and 11 would be better off without me in their life. 

Mental illness made me believe that I am useless and worthless and that I have no skills worth sharing with the world. 

Mental illness made me believe that my close friends and family were ashamed of me because of my illness – for being so weak and useless.   

So yes my mental illness was life threatening.

I am trying to recover, and have been for the last 10 months from the day that I feel like I fell off the planet.  For 7 of those months I have been awarded Personal Independence Payment which I have never claimed before regardless of living with many long term health conditions. And for the last 4 months I have been receiving Employment Support Allowance.  Contrary to popular belief and what the media likes to portray – I do not want to be on benefits for the rest of my life.  I want to get back to work and I want to get back to being able to effectively self-manage my health. 

I want to get back to being the passionate, driven and innovative person than many people know me to be and that I know is hiding within me underneath all this self-hatred and self-doubt.   I’m not going to give you my full CV here but let’s just say I have done some damn good work in this country in the field of mental health, which has been recognised at both national and international level.  And I want to get back to it – but I’m stuck – you have me stuck right here being unwell – afraid to move forward!!

And the reason I am having such a bad day is because I feel completely stuck and in limbo.  You see – if I start to recover then the likelihood is that you will remove my benefits.  And if you remove my benefits too soon whilst I am undertaking this absolutely vital recovery process then I know that I have a high chance of ending back up in the desperate dark place that I have fought so hard for the last 10 months to crawl out of.  You see – just like recovery from cancer, recovery from mental illness takes time. 

For me it also means taking risks – facing my fears, challenging my false beliefs.  Challenging the voices in my head that tell me that I’m a useless piece of crap.  Challenging the voices that tell me that my family would be better off without me.  And let me tell you - this is like running a mental marathon every single day inside my own head. 

Thankfully – like any recovery process things get easier as time goes on, but that does not mean I am recovered.  It means that I am recovering – and if you pull the rug from under my feet then I assure you I am most likely to fall. 

So what do I do???  Do I push myself to take risks which I know is the only way that I will move forward – but risk losing my benefits or do I stay stuck where I am; wanting to be well and effectively self-manage my health & well-being but unable to for the fear of losing the benefits that can help me to get there.

Any advice would be gratefully received.  I don't even know why I'm doing this....  putting my head above the parapit, but I guess in some small way I hope that my experiences will help change things in the future........

Yours sincerely

A distressed and frustrated benefits claimant

DWP - The hand that feeds you - or oppresses you.....

It’s been a while since I have blogged.  It has taken me about 3 weeks to complete this blog.  For those of you who know me, you will understand how bloody frustrating this is for me.  Writing/blogging is one of the things that I can usually do without giving it a second thought.  But sadly my mind hasn’t quite been my own for the last 10 months, as I have been visited again by my old friend depression – who this time has a sidekick, namely crippling anxiety.

Yip – in December 2015 I fell, and I fell hard.  I fell so hard that I felt as though I had shattered into lots of pieces.  I’m still in the process of picking up the pieces and trying to get back together – albeit a different version of me.  A healthier, wiser version! 

For those of you who don’t know me, let me give you a short background.  I have worked in the mental-health field for the last 10 years.  I have worked in a variety of roles and settings, and most recently I founded and developed the amazing charity Hope Cafe Lanarkshire.  I have received awards at Parliament for my work in promoting positive mental health and self-management.  I have worked since I was 15 years old, and reckon that up until this episode I have probably had a maximum of 10 weeks off work in my whole working life (6 of those being after I had major surgery). 

Why am I telling you this?  Because recently I have had to apply for benefits.  I have applied for – and successfully been awarded – both PIP and ESA.  I had a good idea of how difficult a process it is to claim these benefits for mental illness from the previous work that I was involved in, but nothing prepared me for the actual reality of it.  Let’s just say that it was one of the most humiliating and upsetting experiences I have ever had to encounter.  The benefits system is so focused on what is wrong with you.  I was advised right from the outset that everything had to be based upon my worst day: though to be honest, for the first 8-9 months of my illness, 6 out of 7 days were like this.

So fast-forward: it’s been approximately 2 months since I was awarded ESA and placed in the “support” group.  This was a massive relief to me, as at this stage of my recovery I know that I could not cope with enforced work-related activity.  However, I 100% plan to return to work when I am ready.  I look forward to the day that I can return to doing what I love, and I know that I will – when the time is right.   But for now I am very aware that I need to invest time in my recovery.  

Two of my biggest stumbling blocks have been lack of structure to my day, and social anxiety.  Discussions with my circle of support, which include my GP and Psychologist, helped me to identify that volunteering might be a good move to get me some structure back.  I am more than aware of the benefits of volunteering to aid recovery, so with my family we looked at what I could possibly do.  On a rare day out, we stumbled across a Guide Dogs For The Blind stall and heard they were looking for people to foster puppies.  The more we looked into it, the more we realised that it would be a really good way for me gently to start to re-engage with day-to-day life.

So here I am, actively trying to further my recovery.  Pushing myself out of my current uncomfortable-yet-comfortable zone.  But – and it’s a BIG but – the benefits system tells me it wants me to get better … but will “punish” me for doing so.  I know from the experience of many of my peers that the minute you are seen to be able to move forward in your recovery – i.e. advise the DWP that you are volunteering – the likelihood is that your benefits will be re-assessed and reduced or stopped.  I cannot begin to think about having to go through the assessment process again – so my only option is to stay ill.  They don’t seem to understand that you cannot go from unwell to well without the process of recovery in the middle.  This process, especially for people living with mental illness, means slowly starting to re-engage with life again. For me this means re-connecting with the world; engaging in simple day-to-day activities like shopping and socialising.  But by doing so I am terrified that the benefits that I have had to fight so hard to get will be stopped, because I will be seen as no longer ill enough.  This is utter madness.

So here I am, afraid to tell the DWP that I am volunteering.  This needs to change.  I am not up to launching a full-blown campaign here, but I am writing this blog in the hope that someone who has some power realises how absurd our current benefits system is.  It does not support recovery – it hinders it.  

Some may say “don’t bite the hand that feeds you”. However, this hand may be feeding me but it is not nourishing me.  It is holding me back, keeping me down.  Surely this is madness?

I want to get well. I want to get back to work. But this process of recovery will take me time and effort, and I need to feel supported by the system to enable me to do so.  Right now I don’t.  I feel anxious and afraid of recovering, for fear that I will lose my benefits.