Meet the medical mentors
Getting a serious health diagnosis can be frightening, but speaking to someone who has walked in your shoes can make all the difference to how you adjust. Joan McFadden meets the medical mentors who truly understand
There are so many challenges for people living with a physical illness, from initial shock and worry about treatment to staying positive after a long-term diagnosis. Support from those closest can help, but many still feel alone because they don’t want to burden loved ones further than they feel they already do.
Now mentoring is gaining popularity, as people seek out those who have gone through something similar to guide them through the tough times. Having someone who’s been where you are can make a huge difference to how you cope.
It certainly made a world of difference to Emi Carrillo, 38, who had just moved from Ecuador to London four years ago when she was diagnosed with triple-negative breast cancer, which is a very aggressive form.
“I was totally shocked,” says Emi. “I was a little bit desperate and lost but one of my nurses gave me a leaflet from Breast Cancer Now and I phoned them. The lady I spoke to told me about the Someone Like Me service, which would let me talk to someone who had previously had a similar diagnosis at around my age.“
Zahida Ramzan-Asghar,
46, an employment lawyer from Hertfordshire, began phoning Emi, giving her support and providing a listening ear throughout her six months of treatment.
“I spoke to Zahida every one to two weeks and that appointment was something I always looked forward to,” says Emi, who had come to London to join her husband Andrew, who a computer programmer, whose work had brought him over two years previously.
“My husband and I had waited so long to be together and then we were hit with this. My family back in Ecuador were so worried, but also trying to support my sister, who had been diagnosed with a brain tumour.
“Sometimes you just need to cry and talk, and I could do that with Zahida.
“When I was healing I told her that I wanted to do a photographic exhibition and straightaway she said, ‘do it’. I am a trained video editor but was too scared to do it and she made me realise life is too short not to do things we want to do.
“I did my exhibition then trained as a fitness instructor and a few months later, when I was well and fit, Zahida said she thought I would be a great volunteer. I thought it was a wonderful idea. I try to give back to other women what Zahida gave to me.” Zahida had also been inspired to become a volunteer because of the support she found with Breast Cancer Now’s Someone Like Me service, after her own triple negative breast cancer diagnosis.
“It was a total bolt from the blue when everything was going really well,” she says. “We’d completed our family, our children were six and one, I’d been promoted and then this. “Cancer isn’t spoken about very openly in Pakistani culture, so when Breast Cancer Now mentioned the mentoring scheme, talking to someone didn’t initially appeal. But the lady on the phone was so kind I couldn’t say no.”
Now Zahida realises it was exactly what she needed. The impact of her mentor, Gillian, transformed her life.
“I went from feeling totally alone and assuming I was going to die, to feeling empowered and able to deal with my diagnosis,” she says.
“I could tell her I was petrified I wouldn’t see my child’s next birthday. I could have said it to my sisters but I wanted to protect them. No matter how I felt, Gillian said it was OK to feel it. She made it all bearable.
“Ten years on, I’m proud to have now supported 100 other women through similar situations myself. And 10 per cent of those have even signed up to become mentor volunteers themselves. The ripple effect has been extraordinary – I was nervous when I first started but I know I’m making a difference.”
For Jake Williams, 30, a sport development manager from Salford, support came from someone he already knew, Andy Clark, 37, who works in computer programming from Liverpool.
In 1996, the pair were both diagnosed with Crohn’s disease, a lifelong condition that causes chronic inflammation of the gastrointestinal tract.
They met as boys, playing handball, but while they were aware they were living with the same condition, they rarely talked about it at first.
“In school you just want to be the same as everyone else,” says Jake. “Only one of my friends knew about it, but the flipside of that is I was always scared I might have an accident, as I hadn’t told anyone I needed to be able to reach a toilet immediately.”
Andy adds, “We’re similar in that we won’t let Crohn’s stop us from doing anything, but I had a better school experience than Jake. I had a few teachers who had Crohn’s so were very understanding about things like making sure I had access to the toilet.”
However, once Jake was in his teens and Andy was travelling, going to college and starting work, the pair
‘‘ I went from feeling alone and assuming I was going to die to feeling empowered
began to support each other. “I could talk to Andy about real-life situations,” says Jake. “When I left school and wanted to travel, his advice was so practical – do it with medication in your hand-luggage, take extra underwear, always have a pack of tissues, which companies were the best for travel insurance for people with Crohn’s.
“Everyone’s journey is different, but Andy helped me massively growing up and I still feel he’s a step ahead of me.”
When Jake suggested during lockdown that they started a podcast, Talking Crohn’s, Andy found the pair both had advice that could help fellow sufferers. “We’ve talked dating, sport, family, everything,” he says. “It shows how much attitudes to conditions like Crohn’s have changed over the last 20 years.
“Sharing our experiences with others who talk about their lives with Crohn’s helps all of us – similar but different experiences being aired normalises it all.”
■ Breast Cancer Now’s Someone Like Me service (breastcancernow.org) can put you in touch with a trained volunteer who has finished their own treatment and can support you by telephone or email. Contact Crohn’s & Colitis UK (0300 222 5700; crohnsandcolitis.org.uk) for support and information