We often hear of people with viral meningitis being told they have the ‘less serious’ form of meningitis. To mark Viral Meningitis Week this year we want to highlight the realities of recovering from this often misunderstood disease.
Although viral meningitis is rarely life-threatening, it can cause considerable, sometimes life-changing after-effects. These can include, but aren’t limited to, headaches, exhaustion and memory loss.
There is no specific treatment for viral meningitis. The body requires time and rest to recover and most people will feel better after a few weeks. But in a lot of cases people are taken completely by surprise by the gruelling reality of recovering from viral meningitis.
When people feel like they have nowhere left to turn, the support our Helpline and Community Support Officers offer a lifeline that reminds people that, despite the range of experiences and challenges they face, they are not alone.
Can happen to anyone
Viral meningitis is an infection that causes inflammation of the membranes that surround the brain and the spinal cord. It can happen to anyone, and the symptoms can be similar to those of bacterial meningitis. Not everyone will require a hospital stay and most people will make a full recovery. However, the journey to feeling better is often much slower and more nuanced than people are prepared for.
Our report into meningitis aftercare and support found that 94% of people leaving hospital following viral meningitis weren’t given enough information. And 93% reported that after-effects have affected their everyday lives.
Viral Meningitis Week 2025 (6-12 May) aims to raise awareness of the early signs and symptoms of the disease, the importance of prompt medical attention, and preventive measures to avoid infection.
Insight
We are highlighting three stories from real people who were supported by Meningitis Now to understand more about recovering from, and living with, the after-effects of viral meningitis.
Glyn, from Belfast, was diagnosed with viral meningitis when she was 39. She called the doctors three times with an awful headache before an ambulance was called to take to her to A&E.
Glyn had always thought that only babies got meningitis: “I was totally shocked and couldn't understand how I, as a fit 39-year-old, got this. As far as I was aware, this only happened to the very young.”
Glyn had a short hospital stay and was then sent home to try and rebuild her life. She had a young son and a business to look after, which became one of the casualties of her diagnosis when she realised she wasn’t able to continue working in the same way.
Impaired significantly
“I had lost all of my confidence and had a lot of confusion and general memory loss. I had almost completed an English degree; and now struggled with words and spelling. My speech, memory and intellect were impaired significantly.”
The after-effects of meningitis usually reflect damage to various areas of the brain. For Glyn, even years after she contracted the infection, the effects on her brain meant she couldn’t work to the same level she had before. She would suddenly forget familiar faces or everyday work processes and would repeat herself in conversation.
Glyn became very isolated - it wasn’t until she connected with Meningitis Now and was allocated a Community Support Officer, that she started to regain her confidence.
“My Community Support Officer was my confidant. I could tell her everything knowing that she wasn't judging me. She understood what I was going through from her own personal experiences and slowly helped me feel better about myself.”
Glyn has come to accept that her memory may not be the same again, but she is now able to chat easily to friends and enjoys her new low-stress job.
Nothing to prove
“I finally accepted that I am still me and I don't have to prove anything to anyone. I was just going to do the best that I could and that was good enough.”
Charles, from London, was misdiagnosed twice with the flu before his mother realised something was wrong after a strange change in his behaviour.
“I called my mother and started swearing. In all my life I had never sworn in front of my mother. Using her mother’s instinct, she called me back and when there was no answer she called 999.”
Charles was rushed to hospital and later diagnosed with viral meningitis, an illness he had never even heard of before. After two weeks in hospital he had physically recovered but he still struggles with memory loss.
After his initial ordeal, Charles reached out to Meningitis Now for support.
“After being discharged from the hospital I wanted to know more about meningitis so searched online and found Meningitis Now. I called their Helpline and spoke to a nurse who gave me some great information and really reassured me.”
Huge achievement
Charles is now a volunteer ambassador, raising awareness of meningitis at care homes, universities and colleges. He even took part in a cycling fundraiser for Meningitis Now, which was a huge achievement after having to remember how to walk after his diagnosis.
Charles now gives people the information he wishes he’d had about meningitis; “I wish that I had spoken to someone with lived meningitis experience before I had it because it would have definitely helped.”
More than just colic
Anyone can get viral meningitis but it is most common in babies and young children. Ailla, from Northants, was only four-weeks-old when her mum, Kim, realised her baby had more than just colic, as the doctors initially suggested.
Ailla was diagnosed with viral meningitis and after a short stay in hospital was discharged, but she still didn’t seem fully recovered and cried a lot. Kim was left wondering what to do:
“We were discharged with nothing. No follow up, no information about what to expect in the days after, no information about after-effects to look out for. I started to search on the internet and found Meningitis Now.”
Having someone to talk to was not only a lifeline for Ailla but also for Kim, who was struggling to come to terms with how poorly her tiny baby had been.
Support was imperative
“A Community Support Officer came to my house and had a chat. They were able to arrange for local counselling sessions. This support was imperative while Ailla was recovering, but also helped me gather my thoughts, so I could be there for Ailla and my family.”
Ailla is now a strong, healthy and happy 13-year-old. Although she doesn’t remember her own ordeal with meningitis, the memories still live on for Kim. The family, and now Ailla herself, raise awareness and funds to enable other families like them to get vital support.
Meningitis Now is leading the way in meningitis aftercare and support – offering an unrivalled range of information and support services for anyone who has experienced meningitis. We are passionate about arming people with vital information about this disease which is often misunderstood. In the case of viral meningitis, we want more people to know that, although it’s rarely life-threatening, viral meningitis can truly be life-altering. We are here to help anyone currently struggling with or watching a loved one managing the after-effects of viral meningitis.
Call our nurse-led Helpline for more information, emotional support or to put you in touch with your local Community Support Officer on 0808 80 10 388.
