I first found SmellTaste in 2021, after developing distortions to my sense of smell and taste so severe they affected every aspect of my life. Overnight, my diet became extremely limited, and even brushing my teeth would make me feel sick. Going outside meant being overwhelmed by noxious smells, but staying indoors wasn’t much better — everything smelt horrendous. Deodorant smelt like sewage, my own body odour like rotten onions, and showers did nothing to ease the problem.

I had no idea what was happening, and during a telephone appointment, my GP told me it was a result of Covid and that there was nothing they could do.

I was at my wits’ end and turned to the internet for answers. That’s when I came across SmellTaste and signed up for a #LTSAT meeting on parosmia. I cried throughout that first session — finally, there were people who truly understood. Everyone was so kind and supportive, offering advice and giving me the confidence to return to my GP and ask for a referral. Since then, SmellTaste has been a constant source of support, and Mags has always made me feel like I matter. She encouraged me to keep pursuing medical advice, even when I felt like giving up. The #LTSAT meetings, phone calls, resources on the website, and the conference have all been invaluable to me.

I began volunteering with SmellTaste two years ago. It started with a conversation with two students working on a university project about smell and taste disorders. Then Mags asked if I’d be willing to share my story at the start of a #LTSAT meeting, and from there I began hosting breakout rooms. I’ve since contributed to a funding application and recorded a message for a session when I couldn’t attend in person. I felt honoured to be asked and wanted to give something back to SmellTaste after everything they’ve done for me.

For a long time, I’d hoped for an in-person meetup, especially as there seemed to be a few people from the #LTSAT meetings who were local. Work commitments had always made it tricky, but when another volunteer, Gerard, expressed interest in helping, that gave us the push we needed. Sally provided support throughout — it couldn’t have happened without her. I worried people wouldn’t turn up or wouldn’t find it helpful, but the session was fantastic. The feedback was so positive. Many people said they had never met anyone else with a smell or taste disorder before, and it was so meaningful to speak to others who truly understood. Everyone’s story was different, yet there were so many shared experiences. I was thrilled we got the event off the ground and am really looking forward to meeting again.

I would highly recommend volunteering with SmellTaste. Smell and taste disorders are still not widely known about or understood, yet they can have a massive impact on someone’s life. SmellTaste is the only UK charity offering direct support to people with these conditions and working with healthcare professionals to raise awareness. In my view, their name should be as widely recognised as the RNIB. The more we can spread the word, the more people will know they’re not alone.

As a volunteer, you’re given training to help you feel confident in your role, and the staff are always supportive and kind. Most importantly, your volunteering makes a difference. Even if you simply deliver one leaflet to a GP practice, that small action could help someone discover the support they need — or even lead a GP to learn more. I love volunteering with SmellTaste and only wish I could do more.