I coughed 600 times a day for 15 years – I felt like a pariah

It all started back in 2006 with a really bad cold which left me with a cough that just wouldn’t go. 

I was in my mid-40s and otherwise healthy but despite doing all the tests, CT scans, X-rays, doctors couldn’t work out what it was. I eventually got diagnosed with dry cough asthma which didn’t impress my dad. He told me: “We don’t have any weak chests in our family.” Thanks Dad!

This diagnosis would later turn out to be incorrect, but over the years, the one thing I’d come to learn about coughs is that there’s a limit to how much the medical profession knows about what causes them.

When you find yourself with a chronic condition like a persistent cough, you manage it by just trying to normalise it and making it part of your everyday life. You have to get on with it. It’s only when you’re with strangers and they say, “Gosh are you alright? You’re coughing a lot?”, that comes to the forefront of your mind.

I only realised the full extent many years later when I attended a clinic where they suggested I download an app called CoughPro. It recorded between 500 and 600 coughs a day, but that was probably only two-thirds of the real number because I’d go into a work meeting and forget to take my phone with me. I stopped using the app after a few days because it was measuring such high numbers, it wasn’t good for my mental health as it was making me too preoccupied with it.

Sometimes my ribs and stomach muscles would ache because I’d just coughed so much, although over time that didn’t happen quite so often. Fatigue was the biggest thing that really impacted my day-to-day life as I was very busy, working as a legal manager for the civil service along with lots of family commitments. Coughing all the time was not only bloody irritating, it would just really grind me down.

For many years, some of my most difficult moments would be at work, having meetings where I’d have to try and explain myself to external stakeholders. I’d always try to sit near the door, in case I had a particularly bad bout and needed to pop out. 

Because I had this label of asthma for many years, I often felt quite frustrated and dispirited. The symptoms seemed to match that diagnosis, but the inhalers didn’t solve it. I’d go along to an asthma clinic and they’d want to discuss, ‘How well do you think you’re managing it?’ And the conclusion was always, ‘Well perhaps you’re not managing it very well, because you’ve still got the cough?’ Which felt a bit harsh because I was doing everything right – I’d never smoked, I was taking the medication, eating properly, exercising, just living really healthily, yet it wasn’t going away.

‘I felt like a leper’

Eventually, I was referred to a specialist called Professor Alyn Morice who runs a cough clinic in Hull. He told me fairly quickly that he wasn’t sure if it was asthma and tried me on various medications, even a 5mg morphine twice a day, but nothing seemed to make any difference. I was in that small group of people for whom nothing seemed to really work.

But up until Covid, while having a chronic cough was a complete pain in the backside that left me feeling tired, it was something I could get on with. And then suddenly with all the public health announcements around coughs, it became something that had much more of an impact on my life, to the point where I felt like a leper.

The first three months of lockdown in 2020 were okay because we all had to stay at home, and it was just me, my husband, my adult kids, and a son-in-law. That was fine because my family knows my cough isn’t anything to worry about. But over the ensuing couple of years, as we drifted in and out of various lockdowns, and with the information about Covid rates rising in particular areas, it became really, really difficult to cope with people out and out who didn’t understand my condition.

Living in Yorkshire and working in London, I would be commuting back and forth each week which involved several long train and tube journeys. My job also involved taking public transport to travel out to meetings, and while not everyone would say something, they would look worried and then move, which fed into my feeling of being a pariah.

People would either move ostentatiously or discreetly at a station. You’d think they were just getting off the train, and then you’d go to get a tea and see them sitting somewhere else looking a bit awkward.

Passive aggression

But some people would be really nasty. I remember sitting on a train and one woman saying really, really loudly to her husband, “I wish that woman would stop coughing or move,” in a way which was meant for me to hear. I’d religiously take Covid tests and always try to wear a mask even when we weren’t obliged to, but when I didn’t have my mask on because it was exacerbating my coughing, someone would come over and give me a real talking to.

It got to a point where as far as possible, I would travel with my husband because people don’t tend to say anything if you’ve got a bloke sitting next to you. That didn’t play to my feminist instincts, but you do what you can to manage the situation.

The ultimate in middle-class passive aggression came in the John Lewis café on Oxford Street. I’d tucked myself in a corner while my husband went to get the drinks, and a woman walked over and gave me a lecture about wearing a mask. I made out I had asthma, and she instantly apologised. It was slightly surreal, we’d come in to look at soft furnishings and I find myself in conversation with this woman who switches from being hostile and judgemental to attempting to be sympathetic.

It took nearly 16 years before I got any kind of answer. Two and a half years ago, I had a manometry test, which senses the pressure and constriction of muscles in the oesophagus as you swallow. It showed that my oesophagus and swallow reflex wasn’t working properly meaning that a mist would keep landing on the cells lining my voice box. These cells would respond by releasing a substance called ATP which lands on a nerve, making it super-sensitive and triggering the cough. This explanation made perfect sense to me because it always felt like I had a permanent tickle in my throat.

Making a difference

Around the time of this breakthrough, there was a clinical trial of a new drug called Gefapixant, the first new cough medicine in half a century, which reportedly blocked this mechanism. I finally managed to get access to it in November 2023, and initially, I was really disappointed because it didn’t have an immediate effect. Although you try to manage your expectations, there was a lot riding on it for me.

But within a week, I started noticing a big difference. I can now talk on the phone, whereas before I would be coughing helplessly. It’s been more than two months now and it’s been transformational. I have much more resilience and energy, and I just feel like I’ve got my life back.

I need to take it twice every day otherwise the effects wear off, and it’s not cheap. Professor Morice and his team order it from Japan and it costs me £384 for 30 days, as it’s not available on the NHS. That’s quite a lot of money and I’m very lucky to have the disposable income to pay for it, but the thought of going back to the way things were before and being the person who people would move away from or comment on, just fills me with dread.

Instead, now I feel I can go to the theatre, something I’ve always loved but I haven’t been to see a play for years. The same with going on a long-distance plane journey. The idea of being trapped in a confined space, and coughing around a group of people, I wasn’t sure I could cope with all the stress that would go with it.

I still do cough a little, but the drug has reduced it down to something that just feels really manageable and controllable. There’s still a really deep-ingrained fatigue from just coughing relentlessly for years and years that I don’t think goes overnight, but I’m pretty sure will go with time.

So, it’s been an absolute godsend. My husband and I have recently retired and I feel as though we can make plans again and get a little bit of my life back. The mental load which I’ve been carrying for all these years has lifted.

 As told to David Cox