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I am approaching 60 years old, and I have been disabled for many years.
I have Ehlers-Danlos syndrome (EDS) type IV-a debilitating genetic connective tissue disease-as well as osteoarthritis, arthritis, sleep apnea, asthma, and many other diseases caused by EDS.
I used to work, but when the pain became unbearable, I had to stop.
I can’t walk anymore. I have a simple wheelchair and need someone to push me around. My husband tried to help me move as much as possible, but it was very difficult for him-he also had mobility issues and needed a hip replacement.
For a long time, I have been trying to buy myself a wheelchair with my right hand so that I can at least have some dignity. It’s not possible yet, I don’t know when-if any-I can act alone again. Currently, 99% of my time is spent in bed.
Since we live in the United Kingdom, a so-called welfare state, we receive a number of benefits from the country to make ends meet.
We have my husband’s small pension, my personal independence allowance, caregiver allowance and universal credit-monthly payments to the unemployed or low-income earners. On paper, this seems to be enough for two people to get along. But the state deducts pensions and caregiver allowances from our universal credit payments. In the end, we only have enough money left to maintain some food on our heads and on the table. They told us recently that they “overpaid” about a year ago, and now they are gradually recovering it.
It feels like they are doing everything they can to keep us at the bottom of the food chain-let us struggle.
In response to the COVID-19 pandemic, the government temporarily increased the universal credit payment by 20 pounds (27 US dollars at the current exchange rate) per week in early 2020.
When we heard on the news that this plan was about to end, we thought we had nothing to worry about. We are convinced that, due to all the other odds and ends we received, we are not eligible for this additional payment in the first place. The amount we received has not changed in the last year, and our payment details have never mentioned “COVID-19 boost”.
However, all of a sudden, we received a message on our online universal credit log informing us that we will lose COVID-19 payments. Considering that there must be an error, we reviewed the payment details of the past year again. In fact, there is no mention of this payment.
Since it was difficult for me to speak, my husband called them and told them that we had never received any such payment. He asked how they could take back what they didn’t give us in the first place. The lady on the other end of the phone told him that we did receive this subsidy, and the additional payment will stop starting in October.
I was already in tears at this time. We receive an average of £255 (US$350) in general credit every month. We borrow 200 pounds (US$273.5) from my husband’s sister every month so that we can live our lives. Losing 20 pounds a week, no matter how small it seems to others, we cannot afford it.
My husband told the woman on the phone that I was worried and wanted to commit suicide. Her answer was: “Should she do it now?” My husband put down the phone-nothing to say.
Since then no one has called or came to our house to check if we are okay and if I am still alive.
A few days later, our electricity supplier notified us that the monthly electricity bill had almost doubled. The two of us live in a two-bed cabin-we are not managing the national grid from this house.
This is the last nail in the coffin. Now, we don’t know how we will survive. Our general credit payment will be reduced next month. We will have to pay high electricity bills. We are desperate. We don’t know what to do. I still have suicidal tendencies. I am trying to find a reason to live.
I hope we don’t need to apply for benefits, but we do. We are ashamed of relying on the government, but we have all worked hard. We did not choose to be sick, we did not choose to be disabled. We don’t drink, smoke or go out. We rescue and raise dogs, cats and hedgehogs. We don’t have much, but we try our best to help animals in need.
We are not demanding. All we want is to be treated like people and live the rest of our lives with dignity.
I hope the government hears our voices and understands what it means for people like us to lose 20 pounds a week-it is a matter of life and death.
I don’t want to live like this anymore.
If you or someone you know is at risk of suicide, These organizations Might help.
In addition, in the United Kingdom and the Republic of Ireland, please call 116 123 or send an email to jo@samaritans.org to contact Samaritans.
For those who lost their loved ones due to suicide in the UK, please contact Survivors of bereavement due to suicide.
In the U.S, National Suicide Prevention Lifeline It is 1-800-273-8255.
In Australia, crisis support services lifeline It is 13 11 14.
Other international suicide help hotlines can be found at the following website www.befrienders.org
The views expressed in this article are those of the author and do not necessarily reflect Al Jazeera’s editorial stance.
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