Christine Bennborn set up the Meningokockfonden (Meningitis Foundation) in Täby, Sweden, shortly after the death of her son Mathias and has shared her own personal experience many times. “It’s a really powerful way to get messages across to the public, media, and policy makers,” she explains.
“Bombarding people with facts just does not cut through, but sharing personal stories is incredibly effective.”
Mathias died after contracting meningitis it is believed at a party in summer 2019. At first the family thought it was the flu, which was also the opinion of the doctor, and were not particularly alarmed. Sadly, Mathias got rapidly worse the day he became ill. Eventually he collapsed in the shower, rapidly developed classic meningitis symptoms, and died soon after – less than 24 hours after the first fever symptoms. The experience shows once again how swift and devastating the disease can be.
Christine set up the Foundation after becoming aware of how little information and understanding on meningitis there is in Sweden. Since then, she has worked with the Board and other volunteers to raise awareness of the disease – sharing her story on the CoMO website, posting information on signs and symptoms on the Foundation’s social media channels, and doing TV and media interviews alongside medical experts, particularly talking about the importance of vaccination.
“Sharing your story is obviously very hard,” she says. “I live with Mathias’s death every day but talking about it publicly is different. But to me it’s worthwhile if I can save other families from the pain of meningitis that we have experienced.”
“I do have strategies to help me cope. If I’m doing a TV interview, for instance, I find that I can go into a sort of bubble. I may be very emotional before and after, but while I’m on air I can hold things together and be very professional. But I allow myself time to recover afterwards… to sob in the car for a bit for instance… before getting on with whatever I’m doing next. And I protect myself by talking about it only at certain times and places – when I believe it will make a difference.”
Christine recognises that sharing personal stories is not for everyone, that some people feel very private about what happened to them or may not be ready to talk about their experiences until time has passed. “The most powerful story in the world is not worth pain or distress to families or survivors,” she says. “The decision to share stories has to be a personal one, and people need to make sure they are ready, have the support they need, and that they look after themselves through the process”.
But Christine believes that, for her, sharing Mathias’s story is a positive thing.
“Several families have contacted me and said it had made them more aware of the disease, and the need to act fast, which probably saved their child’s life. That makes it all worthwhile”.
If you feel as though you need someone to talk to and you are not based in the UK, use CoMO’s members’ map to find a member in your country. CoMO members like Meningokockfonden have a very personal drive to defeat meningitis and do incredible work in their respective countries. You may also talk to a member of Meningitis Research Foundation’s support team through their live chat.
The Confederation of Meningitis Organisations (CoMO) is a part of Meningitis Research Foundation (MRF). MRF is a charity registered in England and Wales 1091105, in Scotland SC037586, and in Ireland 20034368.
www.comomeningitis.org