‘Long Covid has trapped me in a living hell and not wanting to live anymore’

Content warning: Some readers may find elements of this article distressing.

A mother of four trapped in a “living death sentence” after long Covid ruined her life says she had hoped plans to legalise assisted dying in the UK would help her, but as they won’t, she is determined to end her life in Switzerland.

Kelly Smith-May, 40, has spoken of her conflicting emotions as she is desperate not to leave her loved ones but has been left debilitated with long Covid.

She believes the proposed assisted dying laws for England and Wales don’t go far enough as they won’t help chronically ill people like her who have “zero quality of life”.

Ms Smith-May used to be a bubbly, vivacious woman who lived life to the full. But due to complications caused by Covid, her health drastically deteriorated and she now spends her days lying in bed in the dark.

Unable to see a way out of her “dark abyss”, she is making arrangements to end her life at an assisted dying facility in Switzerland so she can brig her “living hell” to a close.

“I don’t want to die and leave all the people I love,” she told The i Paper. “But I don’t want to remain alive suffering any longer.

“If I was an animal suffering in this way, they would put me down. I just lie there in the dark doing absolutely nothing but existing. It is a living death sentence.”

She is sharing her story as the proposed assisted dying bill for England and Wales seeks to allow adults aged 18 and over who have mental capacity, are terminally ill and are in the final six months of their life, to request assistance from a doctor to die.

However, even if the proposed UK legislation becomes law, Ms Smith-May would not be eligible as she is not terminally ill and not expected to die in the next six months.

The mum, married to Stuart, with whom she has two boys aged 10 and seven, also has a 23-year-old son and 17-year-old daughter. She says all her health issues began after she got Covid in December 2021. Instead of getting better, she gradually became worse until she lost the energy and ability to get out of bed.

Ms Smith-May’s condition deteriorated rapidly as her long Covid progressed to severe myalgic encephalomyelitis (ME) and the neurological disease chronic fatigue syndrome (CFS). ME or CFS usually causes extreme fatigue, insomnia, or even pain in parts of the body in extreme cases.

Her grandmother Kay Philpott, 78, who helps care for Ms Smith-May, explained: “Kelly has very bad days and then some days when she can talk a little bit. She is always in the dark because she is painfully sensitive to light, noise, smells, movement and touch.

“It is so difficult for her watching her two young boys who she can no longer do anything with. It is devastating to see the change in her. Before this illness, she was such a pretty and bubbly girl and was always out with her children.

“But now, she is confined to bed and her days are spent in the dark staring at the walls.

“We paid privately for a doctor from Harley Street and he said there were no definitive treatments or a magic bullet that can bring about a cure.

“It is heartbreaking and no life for a young woman of 40.”

Ms Smith-May can no longer sit, stand or walk and some days, she can barely talk. She suffers from severe insomnia and only manages a few hours of sleep.

She came to the difficult decision that she wanted her life to end as she could not bear the alternative of remaining so ill.

After researching it thoroughly, she decided she wanted to go to a Swiss not-for-profit assisted dying facility. The fees are £10,000 and as she can only lie down, Ms Smith-May wants to hire a camper van so her husband can take her to France via Euro Tunnel and then on to Switzerland.

Ms Smith-May said: “I feel I’m clinging on to life by a little, tiny thread. I’m stuck in a spider’s web and it’s getting tighter and tighter.

“The pains in my body are crippling and every bone feels like it will crack through my skin.

“I was hoping they’d legalise assisted dying in the UK, but even if they did, it would only be for the terminally ill with less than six months to live.

“It makes me feel very upset that chronically ill people have to suffer to death with zero quality of life.

“I want to be put to rest peacefully as I can’t take it any longer.”

Ms Smith-May’s grandmother told The i Paper her loved ones have conflicting emotions about her granddaughter wanting to die.

“I wasn’t in agreement with it because Kelly is my granddaughter and I don’t want her to die,” she explained. “But it’s also upsetting to see her like this every day.

“I feel powerless and emotionally torn. I can’t cure her, only try to comfort her – but that’s not enough.

Long Covid

Characterised by a range of symptoms, including persistent fatigue, breathlessness and fatigue, long Covid is estimated to affect around 10 per cent of Covid-19 patients – around 60,000 people.

While most people recover slowly, the prognosis for those more severely affected is unclear.

Dr Charles Shepherd, honorary medical adviser and trustee at the ME Association, says there is a great deal of overlap between long Covid and ME/chronic fatigue syndrome.

He himself developed ME/CFS after he caught chickenpox from a patient while working in hospital medicine and has had more than 40 years living with the condition.

He said: “I have had periods when I have been severely ill and spent time in bed. These have fortunately been short-lived so I have managed to carry on as a doctor, have a family and done many things that normal people do.”

However, he says that around 25 per cent of people with ME/CFS are severely affected – and a small proportion of these are totally housebound or bedbound, with some being tube-fed and reliant on 24-hour care.

“It takes a real toll and I have dealt with people who have sadly died by suicide or attempted suicide or gone to the Netherlands or Switzerland to end their life abroad.”

In response to Ms Smith-May’s plight, Dr Shepherd said: “It is terribly sad that someone so young and with four children is thinking of taking this way out. It is difficult without knowing all the circumstances, but I can understand when someone’s quality of life is so poor and we haven’t got any drug treatment for this why they might feel this way.”

However, Dr Shepherd says despite the prognosis of severe ME/CFS not being good, there is always hope. “Like with a number of other long-term conditions, we know that total and sustained recovery is unusual and only about five to 10 per cent of people fully recover.

“But the outlook for people with severe ME is unpredictable and there is a possibility things will improve. I know people who have been severely impacted for a long time who have made a degree of improvement and their quality of life has been enhanced.

“The other thing is, although we don’t have a drug treatment for this at the moment, there is a lot of research going on into different forms of treatment, especially for long Covid, which might well have implications for ME/CFS given the similarities.”

“I have only just acclimatised myself to agree with it. Kelly wants to be at peace – and how can I deny her that?

“Her husband Stuart doesn’t back it 100 per cent either as he doesn’t want to lose Kelly. But he doesn’t want to see her suffer either.”

Ms Philpott says the issue of assisted dying is very emotive and complicated. “I think it’s a very delicate subject because how far do you go with it? We can see it in Kelly’s situation, but in other situations, people might be very much against it.

“I won’t go with Kelly to Switzerland as I couldn’t bear it. She doesn’t want to go down the suicide route as she doesn’t want to put her children through that.

Kelly said: “It is devastating looking at photographs of me when I was well. I loved doing my make-up and changing my hair with different colours and styles. I miss me so much.

“I can’t comprehend this tortuous and inhumane hell and I just want it to end.”

Despite the stated criteria within the assisted dying bill, critics say even with the requirement for those whose death “can reasonably be expected within six months”, it is difficult to assess with accuracy when someone may die.

Other concerns have also been raised over the emotional impact on the family and if a review of the topic should have been held before it was proposed as a private members’ bill.

Assisted dying in the UK

MPs voted in favour of a bill to legalise assisted dying in England and Wales in November.

The bill will face months of further scrutiny and votes in the Commons and Lords before the proposed changes could become law.

At present, laws throughout the UK prevent people from asking for medical help to die.

The historic vote saw 330 MPs vote in favour of allowing assisted dying and 275 against it.

Trevor Moore, chair of My Death, My Decision, a campaign group which wants the law in England and Wales to allow those who are terminally ill or intolerably suffering the option of a legal, safe, and compassionate assisted death, says the issue of assisted death can be difficult for family members.

He said: “When someone declares a wish to end their life it can be challenging for family and friends.

“But the option of assisted dying can mitigate that. Rather than a person having to choose secrecy and often bleak self-help methods that traumatise others, comfort comes from knowing they can end their suffering, surrounded by those they love and who love them.

“Each jurisdiction must of course determine its own eligibility criteria, just as we are debating in England and Wales right now. It is time the UK followed the dozens of jurisdictions that already have a law.”

If you have been impacted by this story and need to talk to someone please contact the Samaritans by calling 116 123 or visit samaritans.org. You can also contact Suicide Prevention UK on 0800 689 5652 or visit their website here for additional help.

You can also contact MIND on its support line 0300 102 1234 or visit its website here.

If you are affected by long Covid, you can contact the charity Long Covid Support here.