One morning eight years ago, as I was preparing to go to work, I had an unexpected brain haemorrhage. It was like being hit by a train from the inside. I fell to the floor in agony and somehow didn’t die. The bleed squashed a part of my visual cortex, leaving me permanently visually impaired. Doctors called it a sight deficit (deficit was a trendy word at the time).

I began to have bouts of stress, anxiety and depression. I would need several operations on my brain to prevent me from having a second, fatal bleed. To help me in day-to-day living I was awarded the lowest rate of disability living allowance (DLA). When I wrote a novel, Animal Lovers, I gave my main character a sight deficit as well.

Being accused of faking my visual impairment was my first experience of being treated like a criminal

In January 2018 I was told that my DLA was being scrapped. Presumably this was punishment for the notorious role disabled people played in the financial crisis. I would now have to apply for personal independence payment (PIP).

An assessor came to visit. She seemed nice. I did my best to be good company, in the hope that this would help. She asked me if I carried a white stick. I told her I had been given one but it was too short and made me look like Sooty. She laughed at this, then stopped laughing and made a note.

Her report said that I had no visual impairment and could see well enough to drive. I was surprised by this, as I hadn’t been able to drive even when I could still see. It said I did not suffer from stress and anxiety, on the grounds that I was engaging, made eye contact and “seemed calm”. While this was flattering it didn’t consider that I had tried my best to be all these things because I was meeting someone with the power to ruin my life. The report complained that I went regularly to the theatre, without mentioning that I’d been working in a theatre and had to quit because of my condition.

It also observed that I “had written a novel”. This was my biggest mistake. Novelists are famously free from mental health problems and bad eyesight. What’s more, we are liars. I wondered if Department for Work and Pensions (DWP) staff had read my book for proof of fraudulence, like FBI agents going to John Lennon concerts in hippy wigs.

The report concluded that I was ineligible for any payments. I lodged an appeal and waited. I’ve been waiting for 80-odd weeks.

During this wait my eyesight has got worse. I have had three more operations on my brain. I have written another novel and have done my best not to starve. I have got used to the panic when an unexpected bill has arrived, the sleepless nights from dreading an undetermined future. The DWP said that long delays were to be expected, were par for the course. I moved to a cheaper, grottier flat and told the DWP – twice, to be safe.

My stress and anxiety fluctuated but got worse whenever I spoke to the DWP. A system designed to contribute to disabled people now seemed designed to contribute to our disabilities. I felt too scared to ask what was happening with my appeal. Maybe the DWP would test my eyesight by challenging me at archery. Maybe it wanted me to have another haemorrhage to see if that made any difference.

Eventually I called. I was told that an initial appeal had already taken place. There was surprise that I hadn’t attended; it was felt that my not being there didn’t help my result. The DWP said it had sent the summons to my old address. Giving it my new address hadn’t made much difference. Maybe its staff thought if I was genuinely visually impaired, I’d not see the letter wherever they sent it.

It was at this point I realised I was dealing with an entire organisation of frustrated comic novelists. Sometimes you just have to realise when you’re outclassed. They wrote to me asking, more in sorrow than anger, why it had taken so long to chase the results of my appeal. The fact that I didn’t know it was happening only added to their suspicion.

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It feels odd, for someone who grew up in a welfare state, to shake off the idea of a safety net, the notion that in hard times the state will be there to help. Being accused of faking my visual impairment was my first experience of being treated like a criminal. I began to fear the state more than I feared poverty. In periods of joblessness I resisted signing on, to avoid the threat of sanctions. I may have known my rights but it felt safer not to assert them.

Still, I wonder if persuading vast numbers of people that the state is now their enemy is liable to backfire. The vulnerable have votes and one day they may use them. Then again, they might not. More than 17,000 people have reportedly died while waiting to hear if they were eligible for PIP. Sometimes if you avoid tackling a problem for long enough, the problem goes away.

• Rob Palk is the author of Animal Lovers