Samara Barnes’ story: If we can break the stigma and improve diagnosis that would be a good thing

Written by Samara Barnes

Merry Christmas – we think it’s TB.

Ok, so that is not exactly how I was told that I might have TB, but when I put the phone down to the manager of my local doctor’s surgery at 4.50pm on Christmas Eve back in 2015, it might as well have been.

I had had a cough for several months, in fact for so long that I didn’t even notice it anymore. But everyone else did. After a family holiday in the autumn of 2015, my husband persuaded me to see my local doctor as everyone we had been away with had commented on how much I was coughing.

My first visit to the doctor was as I had thought it would be - I was told it would be viral and that there was nothing that could be done. When I went back two weeks later, they agreed it was worse so gave me a course of antibiotics. A few more visits and with no end in sight for the cough, I left them scratching their head and was given a diagnosis of asthma and an appointment for a chest X-ray. Following the X-ray results, an MRI was booked for the following day. It was at this point that I started to panic. All I could think was that you only get to be seen quickly when they suspect something sinister. As it turned out, this MRI took me right up to a few days before Christmas. That was when I got the call.

This first call on Christmas Eve invited me to see a consultant two days later on the day after Boxing Day. I asked what they thought the issue was, but they refused to tell me despite me begging and crying on the phone. That was it. I was going to die. I convinced myself that I had lung cancer and that they wanted to see me so quickly because I didn’t have long to live. Five minutes later, the practice manager rang me to inform me that it was suspected TB and that I didn’t have to write my will on Christmas eve. But that was it. No more information. I spent the following 48 hours searching the internet and reading everything I could find on TB – Christmas might well have not happened.

I headed to my consultant appointment not knowing what would happen next. As it turned out, he and the nurses could not have been more friendly, helpful, and supportive. I was quickly diagnosed with TB and was started on aggressive treatment just after the new year.

I don’t have much of a memory of the first couple of weeks on treatment because I slept most of the time. I ate very little and lost 10lbs in two weeks. I had a lot of side effects from the medication and ended up having to take other pills to manage those side effects too. What was particularly tough was finding out a few weeks later that the TB I had was resistant to the main drug, Rifampicin, which meant I would be on different treatment and for an extended period of time.

The one thing that no one tells you and probably the worse part of it all was the stigma that still surrounds TB. People who I cared about and who I thought cared about me completely changed. Even though after two weeks on my medication I was no longer contagious, people who I thought cared about me refused to visit. I had to contact people who I had spent time with and suggest that they were tested for TB. Whilst most were happy to be tested, some reacted badly, and some refused to be tested or even suggested that I had purposely put them in harms way.

Ten weeks later and I was back at work. Three months after that I completed a challenging obstacle race called Tough Mudda. I was determined that after being so poorly and breathless, that I would do as much as I could to improve my lung function and look after my health in general.

Being ill seems like a distant memory now. But what sticks is the frustration I felt during the diagnosis period. If my doctor had asked more probing questions, they might have sent me for diagnostic tests sooner. On the surface, I didn’t fit the profile of someone who could have TB, but I worked in close contact daily with homeless people who are more vulnerable to TB. I was never asked about that!

I really hope that diagnosis of TB becomes quicker and easier for people. And breaking the stigma would help with this as people won’t come forward whilst there is still shame surrounding the disease. These hopes are two of the reasons why I wanted to join the UK Academics and Professionals to End TB (UKAPTB) network. As an individual, I can’t affect change but using my voice to advocate for others will hopefully support this amazing group of academics and professionals in their endeavour to make things better for the TB community and help lead to the eradication of TB by 2035.

If you feel unwell, please be persistent. Keep going back to your doctor until you get a full and thorough diagnosis.

There is a good life after TB and luckily for me, many more Merry Christmases to come.

Samara Barnes is Affected Community Co-Lead of UKAPTB. She was diagnosed with active pulmonary TB in late 2015 and it was discovered she was also drug resistant a little while into her treatment. Until that point, Samara knew little about the illness apart from the fact that her grandad had died of TB many years previously.  Samara has raised money for TB Alert, the UK’s national TB charity, and has been part of their peer support programme too. She has also studied and written papers on the global disparities in TB treatment.  It is important for Samara to raise awareness of this illness, be an advocate for reducing the stigma surrounding it and to encourage decision makers in the UK to ensure they keep to their commitment of a year-on-year reduction of TB and contribute to the WHO's commitment to eliminate TB by 2035. Samara works for a national children's charity and is also a borough and county councillor.