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A 34-year-old mum living in agony with severe arthritis has described her daily struggle to cope with the pain.
With heartbreaking honesty, she tells Melissa Todd of the desperate measures she would be prepared to take if money was no object and the law was on her side…
My friend K, a beautiful mother of two, has been struck down by rheumatoid arthritis.
The pain is so intense it wakes her up at 2am most nights: she’s grown used to this being the start of her day.
The former waitress, from Ash near Canterbury, can’t turn in bed without screaming, or stand up, for several hours. Gradually her joints start to loosen, but often not in time to drive her children to school.
It came on last year, without warning and without mercy. Steroids helped, a little, but she can’t stay on steroids forever; long-term use weakens your bones and impacts negatively on your heart, kidneys and liver.
Instead, she now injects herself with methotrexate – a type of chemotherapy - on Fridays, so her husband is around to help with the children for the next couple of days. The injection burns, seems to make the pain and stiffness very much worse, and makes her nauseous.
The only other possible treatment is Humira, a biologic medication, although her specialist keeps telling her it’s “very expensive”, in a tone that suggests K might be exaggerating the extent of her symptoms. Although what possible benefit she might derive from being injected with a substance that will cause nausea, headaches, muscle and bone pain, we cannot fathom.
“I think I might choose to die,” said K.
“Not just yet, of course, because my children are still so young, but in 15 years or so.
“If I’m simply a burden to everyone, if there’s no pleasure in life, no enjoyment, why spend another 50 years in intolerable agony? Bed-bound and screaming? Where’s the dignity in that?”
Like other issues that surround death, abortion and capital punishment, the topic of euthanasia provokes powerful reactions. The right to life feels fundamental and indisputable. The idea of elderly or disabled people being persuaded their lives are worthless and should be ended revolts our shared sense of what it means to be human.
And yet, where people are in pain and see no future, shouldn’t they be allowed to choose their own end?
Esther Rantzen has made this point with the clarity and candour which has characterised her career. If K will not get better, why must she wait for her body to succumb to the inevitable, after a slow, painful, undignified deterioration, when a quicker, kinder solution lies at hand?
My step-father was eased out of life with morphine so I didn’t have to watch him slowly suffocate. That was still the decision of the doctors who attended him, rather than his.
“I couldn’t take my family with me to Switzerland”, K continues. “They might be arrested when they get back to the UK for having assisted in my death. And Dignitas costs £15,000 anyway, so I doubt I’ll ever be able to afford it.”
K is on the lower rate of Personal Independence Payment – a benefit for those with extra care or mobility needs – at £380 a month.
“Still. The hope of death helps me through the night,” she tells me.
I hope with all my heart her specialist can find and fund a medication that will help with her symptoms, and from a place of happiness and health she will regard her suicidal ideation with incredulity.
Currently, a team of medics are having meetings to see if they can justify the cost of the biologic treatment, which needs to be injected fortnightly. Decisions have to be made in healthcare; a country could easily spend more than 100% of its GDP on keeping its people healthy. But a young mum of young children feels like a priority.
If you manage to skip down the street today, pain-free, remember to be grateful for your good fortune.
For confidential support on an emotional issue, call Samaritans on 116 123 at any time.