Navigating the benefits system: Linda's story
62-year-old Linda has experienced mental illness throughout her life. Despite striving to work when she can, physical health issues and her diagnoses of bipolar disorder, anxiety and post traumatic stress disorder have led to her not being well enough to work. Accessing benefits has been a necessity to get by, but the tricky system has often exacerbated the symptoms of her mental illness rather than easing her money worries. Here's her story.
Throughout my life, I have faced a lot of traumatic life events. During my 20’s, I experienced domestic abuse from my husband and also became a carer to my terminally ill mother. I eventually left the home I shared with my husband and after having my second son, I was hospitalised with severe depression.
It was difficult to go into hospital, but I managed to get back on my feet, and managed to buy a small cottage while returning to study.
As well as having mental health problems, I also faced physical health issues after having an operation to help my endometriosis. I experienced severe mood swings, sleeplessness, manic episodes, and delusional thoughts.
In 2002, I had a complete breakdown and was hospitalised again. I was later diagnosed with bipolar disorder and severe anxiety.
I juggled being a single mum, managing my mental illness and trying to work when well enough.
Many difficult years followed as I juggled being a single mum, managing my mental illness and trying to work when well enough – all in the face of prejudice due to laps in my employment history.
It wasn’t until 2016 that I was finally referred for psychotherapy and cognitive behavioural therapy. It gave me a much-needed understanding of my condition and how to manage my symptoms. For the first time in a long while, I felt relieved because no one had ever explained what was happening to me. This sense of relief soon turned to anger because I was mourning all the years I had lost in thinking that my mental illness was my fault. I was also diagnosed with post-traumatic stress disorder.
I enjoyed working part-time as a teaching assistant especially given how long it took to find an employer who would accept an employee within the Employment and Support Allowance (ESA) framework. I felt lucky that my employer was flexible enough to drop my hours to abide by the strict rules imposed by the Department for Work and Pensions to be able to still claim my benefits. I also felt like my employers had improved their attitude and support towards mental health.
I finally felt happy – I finally felt accepted.
Having taken on extra shifts at work, my ESA payments were a mess. I was honest and reported I had been overpaid but without warning, I was taken off ESA altogether and referred to a DWP decision maker who would investigate my overpayments and whether I would be 'prosecuted'.
It was in 2019 when I found the complexities of navigating the benefits system a lot to deal with on my mental health. Having taken on extra shifts at work, my ESA payments were a mess. I was honest and reported I had been overpaid but without warning, I was taken off ESA altogether and referred to a DWP decision maker who would investigate my overpayments and whether I would be 'prosecuted'. The whole process was a nightmare because I felt like I was being played with mentally from the threatening messages and all the hoops I had to jump through. My anxiety got a lot worse from this point onwards. I thankfully wasn’t prosecuted but I’m paying back £1,700 at £10 a month. It was six months of stress and fear until they finally told me their decision.
By this point, the school closed down and the bills began to mount up. I applied for full-time positions knowing full well they would be too much on my mental health but I had no choice. I thought what else can I do? I’m on my own and need to get by. I lasted two weeks in a new position before collapsing - I was physically and emotionally exhausted.
I've since been diagnosed with primary oesophageal motility disorder, fibromyalgia and chronic fatigue syndrome. After being discharged from mental health services in 2018, I have now been reinstated with them and have weekly support with a Community Mental Health Navigator who is wonderful. I receive a standard rate of Personal Independent Payment (PIP) thanks to Citizens Advice, and also receive Universal Credit with the extra sickness element.
The loss of the £86 to my Universal Credit has been a terrible blow. It will mean I will struggle to heat my home, or will have to cut back on food.
Now at the age of 62, I struggle daily with anxiety but try to be positive on the whole. I'm grateful for the benefit I do receive, but am always aware it could be taken away at any time, and the thought of having another DWP health assessment is very stressful.
The loss of the £86 to my Universal Credit has been a terrible blow. It will mean I will struggle to heat my home, or will have to cut back on food. At this present moment I am writing this with a blanket around me, and unable to buy things I need such as a new bed and fridge-freezer (both old and broken) without adding more debt to my credit card. The panic from many years ago when times were hard up have come flooding back. Everyday there’s an underlying worry that I could spiral into more debt from not being able to make ends meet and sometimes it’s difficult to see any goodness in life. One thing that I do have now though is a fire in my stomach, an anger almost, at how unjust the system is to help people in similar situations to mine.
I’ve finally found my voice and I hope my experiences will help others to understand they are not alone and that support is out there.
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