Long Covid has left me feeling worthless and invisible – and Labour is making it worse

My name is Sam. I am 52. I am doubly disabled. I am Autistic and I have been disabled with long Covid since 15 March 2020.

There are two parts to my disability experience. The first part is the disability itself. That’s really bad. The second part is how society treats me and people like me. That’s much worse. The UK is in deep denial about long Covid and about all disabilities. Society both ignores and shames me.

My feeling of social abandonment is total.

One in four people in the UK are disabled and our numbers are growing. Around 4% of the UK have long Covid. A recent survey showed that one third of all health care workers have long Covid symptoms. 1% of all kids have long Covid.

Long Covid continues to grow because of the deep denial.

Labour is proving to be much worse than we thought

Being disabled under a Tory government was awful. I had no idea that it would be so much worse under the Labour Party. You know that saying sticks and stones may break my bones, but words will never hurt me. It’s not true.

Something has happened to the Labour Party. They have become obsessed with economic growth. To Labour growth is the only metric of prosperity and success. As a consequence, paid work is now the only unit of worth. As soon as the general election was over, Keir Starmer was talking about the need to get the long-term sick into work and most Labour ministers on the media round started talking about ‘economic inactivity’.

Economic inactivity is a rather derisory and inaccurate name for people on benefits. It’s inaccurate because I receive DWP PIP, and every single penny of my benefit money re-enters the economy. Not only has Labour become obsessed with economic growth, they keep talking about wealth creation, like something out of the 1987 film Wall Street. For Labour, wealth creation may only be achieved through paid work. I started feeling that for Labour worklessness is worthlessness.

Writing in the Telegraph Keir Starmer said “hand outs from the state do not nurture the same sense of self-reliant dignity as a fair wage”. In one stroke, Starmer denigrated stay-at home-parents, carers and people on benefits. It’s a deeply conservative position, and devalues half of all contributions to society.

Chronically ill and disabled people are not scroungers

On 17 July, I posted this on Twitter:

The New Labour Government has created 2 tiers of people, people who do paid work are of value, people who create wealth and economic growth are to be celebrated. Everyone else is completely worthless. That’s the story they are telling. I have never felt less valued.

To my mind, a kind and virtuous society cares about people out of work for their own sake, a kind and virtuous society acknowledges that those who do unpaid work are valuable contributors to society, a kind and virtuous society acknowledges and makes space for disabled people and where possible tries to make them better and give them the best care. Labour isn’t behaving like a kind of virtuous society.

Here’s the thing, people with long Covid want to work. They want their health back. We can’t do that without treatments and medication. At present, the Labour government is doing nothing to help.

Recently, respiratory physician David Joffrey wrote:

It is crucial that issues around plans for rehabilitation and return to work strategies appreciate that the vast majority of long Covid patients will never achieve anything close to their prior function.

As the year has gone on, Labour politicians have been drip feeding more and more scare stories to the media.

Gaslighting and re-traumatising people with long Covid

Talk of migrating of all benefits into Universal Credit, reducing PIP to vouchers, cutting the benefit bill down. It emerged recently that the Department for Work and Pensions (DWP) launched a consultation on disability benefit cuts. It did so despite failing to work out how many of us would get a job as a result of having our benefits removed.

I was getting more and more upset. If it wasn’t Wes Streeting pushing weight-loss drugs on the overweight unemployed, it was Liz Kendall sending work coaches to see the mentally ill in hospital.

My friend Dr Jenny Ceolta-Smith has long Covid. On 21 October, Jenny made a video on the stigmatising language of economic inactivity and long Covid for the Greater Manchester Coalition of Disabled People. The video was to be my inspiration.

A brilliant video by Dr Jenny Ceolta Smith @JCeoltaSmith made for the GM Disabled People's Panel event 'Good Employment for Disabled People' on the stigmatising language of 'economic inactivity' and Long Covid@long_covid  @workingwithLC https://t.co/GNyvYrDKCN

— Greater Manchester Coalition of Disabled People (@GMCDP) October 21, 2024

Jenny asks:

Will there be a pathway within our Social Security system for us to live well, if we cannot work? Economic inactivity rhetoric causes us harm. It is distressing, fear inducing and has led some of us to have suicidal ideation.

Jenny reminds us that many people became disabled with long Covid in the workplace due to inadequate safeguards. And it’s not just the workplace I don’t feel safe in. I am being cut off from feeling safe when I go to the shops, to the doctors, to visit family.

My friend Anne has long Covid and she is losing her job because she is no longer being allowed to work from home. On 22 October, I woke up in profound distress. I was in tears, which is incredibly rare for me as an Autistic person.

I made a video in an attempt to explain what I have been experiencing.

Worthless and invisible

There’s a book called The Body Keeps The Score: it’s about how our bodies absorb and retain trauma. That’s what my video is about. I suddenly realised that a combination of the social abandonment and the toxicity of the Labour Party rhetoric has been making me feel worthless and invisible:

Hi, my name is Sam. I am 51. I have been disabled with #LongCovid for 4 and a half years. I have made a video about how the Labour Party's language around Economic Inactivity has made me feel worthless. I am in tears in this video, which is very rare for me, an autistic person.… pic.twitter.com/DXcf8vVUZL

— Sam🐟❤🌈😷🌍🇵🇸 (@CounsellingSam) October 22, 2024

So much so, that I have been neglecting to look after myself in the most basic ways.

I have been able to carry on being of service to my family but not to myself. For example, I have been forgetting to keep myself clean, let alone perform any personal grooming.

I have absorbed the Labour Party message that I lack the “same sense of self-reliant dignity”.

I’m crying as I write this.

I made a vow to try to look after myself a bit better. Let me tell you the results: I have been in a Long Covid crash ever since. I don’t have the energy to look after myself and cook the dinner and walk the dogs. I have had to spend a lot more time in bed during the day. I’m more disabled than I thought.

I have continued to feel upset. The video seems to have meant a lot to everyone who’s seen it. I wish the Labour cabinet was brave enough to watch it. The best feedback is from clinical psychologist, Dr Jay Watts:

What Sam captures so powerfully, though, are the quieter, equally devastating effects on our everyday lives—the struggle to feel worthy of basic self-care, like moisturizing our skin or nourishing our bodies. How can we care for ourselves if no one cares for us? Our interdependence, whether working or not, is not just about survival; it’s essential to our humanity, to our drive to live. Sam reminds us of the real cost when we let policies assign value to human lives.

Long Covid: are out lives cheaper than everyone else?

As I finish writing this, life seems cheaper than ever.

The minister for public health, Andrew Gwynne, has confirmed that Labour hasn’t bought any of the much-needed alternative Covid vaccine Novavax. If you’re clinically vulnerable, or susceptible to vaccine injury, your only option is to pay for it and travel to wherever it’s available.

Sadistic DWP Secretary Liz Kendall still won’t reveal if PIP payments will be replaced with vouchers.

I am more disabled than I thought.

I am so glad I have written this article, and it has taken a terrible toll. It has dramatically worsened by Long Covid neurological symptoms, and made me feel really ill. If it causes a few people to rediscover their humanity and make space for me in the world, it will have been worth it.

Featured image via the Canary