Kelly's Story: Long Covid And Assisted Suicide

I want to introduce you to Kelly Louise Smith-May.

Kelly is a 39-year-old British mum of four crowdfunding her own death.

This is because Kelly is suffering unbearably with long covid.

I came across Kelly’s story when the official go fund me account on twitter sent me a link to her crowdfunder because they’d seen I’d previously written about long covid, myalgic encephalomyelitis and chronic fatigue syndrome.

These terms are often used interchangeably because medical guidance and practice around these types of chronic diseases with no reliable biomarker is shocking. This has left ME/CFS/long covid sufferers in limbo: disbelieved, gaslit, mistreated, and mostly untreated.

While the symptoms of these diseases are on a spectrum of severity, in the worst cases it leaves people with desperate fatigue and endless pain. Sufferers lie in bed wearing ear muffs and blindfolds, exposure to light and sound crippling. Talking is a struggle. Walking is out of the question. This is Kelly’s experience.

When I posted Kelly’s crowdfunder on twitter, some people found it too shocking to be true. Many didn’t. Those with severe long covid/ME/CFS know why Kelly would decide on death.

I got in touch with Kelly and verified it. I then asked her if she would be able to answer a few questions so I could share her story.

Kelly is too fatigued to speak, so over the course of a week she wrote out some answers, always apologising for her slowness.

Kelly’s nightmare began in late December 2021, when she was infected with SarsCov2, the virus that causes covid. She says she felt the virus “go straight to my brain.” Prior to her infection, Kelly had no health issues. She was a healthy, active mum who lived for her children. (It’s important to note that by December 2021, omicron, billed as ‘mild,’ had taken over as the dominant strain).

She says the virus “triggered severe ME. First it was my brain that felt totally not right. I was constantly dizzy and felt like there was a huge fog inside my brain. It’s been like this ever since. It affected my vision straight away too. I felt poisoned. But it’s worse now. I gradually started to crash just walking downstairs. It was like something was sucking the life out of me.”

By July 2022 she was fully bedbound.

Every doctor Kelly has contacted has failed her. She has never been taken seriously or given any medication. Kelly says after being infected she called her doctor’s surgery every day for 6 months “begging for more and more blood tests.” She says they ran all the usual tests but they showed no abnormalities. This is extremely common for long covid/ME/CFS sufferers. On paper, everything looks fine.

Her doctors, she says, became “very abusive and rude to me” when she persisted in her efforts to be taken seriously.

“One shouted at me and said oh this isn't anything to do with covid! One hung up on me after I was begging and pleading for help. Another said she can't help me and that she has cancer patients who can at least get themselves to a hospital. I explained I feel that I’m dying and being poisoned. She also eventually hung up on me. No meds have ever been given to try and help me. I asked for low dose abilify (an antipsychotic that some sufferers have found relief using) but was refused.”

Encountering unhelpful and disbelieving medical professionals is also a very common experience for long covid sufferers. It seems to reflect the arrogance of a medical profession that assumes there is nothing left to know about diseases, especially not chronic diseases. Or at least nothing left that they want to know.

With no prospect for any treatment, and after being shown no care or compassion, Kelly recently came to the decision that ending her life is the only way to relieve her suffering.

“I can't take it any more Nate, it’s pure suffering. It’s pure relentless, inhumane, cruel suffering that never let's up, not even for two minutes. I always feel a heartbeat away from dying. I feel like it's some sort of punishment for loving people too hard through my life. I can't comprehend this happened to me when I'm such an amazing mother to my four children.”

She says her family have taken a long time to accept that she is not getting any better.

“At first they thought long covid meant it just takes a long time to get better from covid. They didn't think long covid and myalgic encephalomyelitis were the same thing. Now they have witnessed the suffering, especially my husband and nan, and agree its totally cruel to let a human being live this way. I tell them I can't do this another 6 months and definitely not a year.”

I asked her why she had decided on assisted suicide (if she can raise the money, and if the facility in Switzerland will accept her). “Every human being has a cut off point and I've reached that so I decided VAD (voluntary assisted dying) was my best option to be at peace forever.”

She says that she doesn’t want to put her husband and children through the inevitability of her painful death. “Basically I don't want to decline further where I can't even eat and my children and hubby watch me die of starvation in my bed at home. This would affect my children more, watching me suffer until I eventually die (than a voluntary assisted death would).”

I can believe this is happening to Kelly, because I know more than I ever wanted to know about covid, long covid, ME/CFS. I know what this virus and these diseases can do.

But I can’t really believe it has come to this.

I can’t believe a new virus that can cause such suffering is swilling unhindered around the world, infecting people sometimes numerous times a year. I can’t believe the medical profession has been able to get away with leaving ME/CFS and now long covid sufferers untreated for so long. I can’t believe how people with these diseases are mocked and abused.

It is more than just medical malpractice. It is, as Kelly says, inhumane for doctors to treat patients like this.

Kelly’s story is not unique. Many millions of people are experiencing the same pain and unbearable suffering. The numbers have skyrocketed since our governments let a brain-invading virus take over the world.

The lies, the gaslighting, the malpractice, the lack of compassion. It is disgusting.

I know of other young long covid/ME/CFS sufferers who are crowdfunding for experimental treatments. I know others who, having exhausted every avenue open to them, opted for assisted dying.

It’s not right. Something needs to change.

As I have written about before, there has been a coordinated campaign, led (in the UK at least) by the country’s most elite medical professionals to deny the seriousness of ME/CFS. Doctors with a laundry list of titles have for decades punched down on patients. There is very good evidence that the seriousness of ME/CFS has been denied in order to slash the welfare state.

It is another form of class war.

I am disgusted thinking about it and writing about it. I cannot imagine living it.

This is the most important thing I’ve ever written.

I hope it is shared and reflected upon.

I hope it shines a light on the uncaring, arrogant doctors who believe they are above trying to help people like Kelly. Steadfastly incurious people who appear determined not to learn.

I hope it is seen as a damning judgment on these people, and on public health authorities that downplayed covid to speed us back to normal.

I hope everyone will draw the obvious conclusions about governments that spend billions every year on weapons of war but won’t properly fund research into debilitating diseases suffered by their own citizens.

I hope it makes others think about the harm they could do to someone by infecting them with covid.

I respect Kelly’s choice, but of course part of me hopes someone might read this and it will lead to her finding treatment.

I hope more than anything that Kelly finds peace.

I want to end this with the pinned message on Kelly’s facebook page which she has given me permission to share.

I love my 4 beautiful children

You gave me purpose to breathe everyday

Having you four was the best times of my life, nothing else compares and nothing else matters

Kai, Tawny, Zayn, Jett

My love for you four runs so deep, nobody or nothing will ever take that away

Live the best lives imaginable, never give up, never be walked over and don't give out too much of your hearts to the wrong people, they don't deserve it

Keep your hearts strong and love yourself

Number 1 always

Love mum/mummy