Imagine suddenly feeling an urge to engage in risky and totally unusual sexual behaviour that was miles apart from your carnal impulses before. Without any warning, or anything changing in your everyday life, you start waking up in the early hours of the morning, before your child and partner are up, to cruise for sex – wearing a see-through top and jacket – and then flash your chest at any passing man. You don’t care about the dangerous consequences.
This was Claire’s new reality. She had no idea why. But it could all be linked back to a drug she had started taking for restless leg syndrome.
Claire joins others who have been sharing their horrifying stories with my BBC colleague, the investigative reporter Noel Titheradge, to raise awareness in one of the most quietly important pieces of journalism I have read for some time.
These people say doctors didn’t warn them about serious side effects of ropinirole, a drug designed to help them with movement disorders which instead ruined their lives. Some, like Claire, carried out risky sexual behaviours, while others gambled away tens of thousands of pounds they didn’t have.
It took Claire years to connect the drug and her new-found “deviant” urges, as she and others describe them. When she stopped taking ropinirole, those feelings driving her new behaviour also stopped immediately. She felt shame and was totally “mortified of the danger she put herself in”.
No one who gave her the drugs made the link explicit. In the drug’s leaflet, there is a general warning about harmful behaviour and increased libido, but even so – would you connect the dots? Especially if it hadn’t been pointed out by your doctor?
A report from the drugs firm GSK, seen by the BBC, shows it learnt in 2003 of a link between this type of medicine and what it described as “deviant” behaviour.
It is this crucial space between doctor and patient, appointment and prescription, that I want to focus on. It’s a Wild West – and can be a terrifying place to be. That’s why I believe reports like these are so very important. They hold a clear mirror up to how much a patient will knowingly, or in this case unknowingly, accept in an effort to be “cured” of the illness they went to the doctor about.
square EMMA BARNETT
Motherhood and the real cost of hormones
Read MoreI should know, because over the past 18 months I have tried the Mirena coil, four different combined contraceptive pills and a daily high dose of bio-identical progesterone, all in an effort to dampen down my endometriosis and adenomyosis, and have a better quality of life. Each one of these doctor-guided experiments has ended in dismal failure, leaving my confidence in medical care for my conditions on the floor, and me on my knees.
I am woefully familiar with doctors, as well-meaning as they might be, telling me to “wait it out”, “see how you go”, “it should pass” and, my favourite, “that doesn’t usually happen” or “I have never seen that before”.
With great sadness and frustration, I accept that I have two diseases no one knows how to cure or treat. Everything is guesswork and the least worst option. But knowing what’s tolerable, and what side effects you should and shouldn’t have to cope with, is an area that doctors can do much better on.
Perhaps that responsibility should also fall on someone in the middle who has intimate knowledge on the drug you are being given: your pharmacist.Our highly trained medicine dispensers know the profile of many drugs, so this seems sensible. But this isn’t how our system typically works and pharmacists are crying out for more support and funding as many of them struggle to keep their businesses going.
In starting this new limbo land and a life on a new drug, there is no expert to hold our hands and guide us through the twists and turns of a new medicine.
How are patients meant to know what’s normal and what’s not? What will “pass” and what won’t? And, crucially, how many days, weeks or months should you give a drug that means you can’t lie down without the room spinning?
I had that one with the contraceptive pills I was asked to take and try to tolerate for weeks. I managed six in the end, without any improvement. The hellish symptoms were torture and coincided with our summer holidays. Parenting through that is something I would never recommend to anyone – especially not in extreme heat.
Living in that space, with yourself and family, is the hardest. You turn to unwell friends, forums, strangers and random websites. But at least I knew what had caused my vile symptoms. I wasn’t just suddenly dizzy, sad or nauseous for no reason. It is terrifying to think that some patients don’t even know why they are suddenly acting out or feeling like a stranger to themselves.
I am hugely grateful for medicine, doctors and pharmacists, but still this care gap persists, in both the NHS and the private sector. I have had to use both. Even in our strained systems, we need to urgently address what happens in the spaces between medical appointments and our lives – and what can happen to our sanity and our entire sense of self.
This week I’ve been…
Reading…
Orbital by Samantha Harvey
I am finally reading this slim but already stunning book – I am just 10 pages in. My radio job means crazy things like I actually interviewed Samantha the morning after she won the Booker Prize. She was totally shocked, clutching the glamorous trophy, but still managed to explain the purpose of her book beautifully. I made a note to buy it and for once enjoy the zeitgeist at the time it happens – not seven years late.
Watching…
Veep, on Now TV
Speaking of zeitgeist and being very late to a party, I have finally started Veep, a million years after everyone else. It took me 12 years to do The West Wing and seven to do The Sopranos. It’s awkward, shot realistically and sometimes almost too close to what I know can be true in and around politics.
Listening to…
Wiser than Me – Spotify
It’s a Julia Louis-Dreyfus kind of week. In this podcast, which a colleague shared with me, the actor shares some thoughts, and then speaks to an older woman to glean wisdom and tips. It’s a neat idea and feels just a lovely thing to have one’s phone for when the mood takes you.
Read More Details
Finally We wish PressBee provided you with enough information of ( Medical side effects have left me on my knees – how much longer can we tolerate this? )
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