Beverly S's story

Beverly, from Gloucestershire, had meningitis 35 years ago. Since her diagnosis, she has been living with the after-effects of the disease but didn’t fully understand the impact they had on her life until she accessed support from Meningitis Now. She tells us her story.

“For a couple of weeks I had what I could only describe as a migraine, even though I knew it wasn't, I was too confused to explain. It was something I'd never experienced before but I couldn't find the words to describe it.

“I remember it so well - it was a deep, painful pulsating feeling above my right ear. I had three doctors visit me at home over three days. the second doctor told me to stop wasting their time. If I'd listened to him and gone back to sleep instead of calling for another opinion, I wouldn't be here today.

“I slipped into a coma in the ambulance and was transferred to a neurology hospital where they woke me every 15 minutes for weeks. I remember once that they couldn't wake me - I was deep in a place that felt so comfortable and warm; I felt the most peaceful I'd ever felt, as if I was as light as air, floating, and with the most beautiful colours all around me.

Huge jolt

“I eventually heard the doctor calling my name repeatedly. It penetrated my dream and I felt a tap on my face. I felt a huge jolt and heard myself inhale sharply, the beautiful peace was over. I hallucinated a lot at that time.

“For two months I was in hospital, constantly on drips. My neurologist told me that nobody had ever survived the type of meningitis I had (thanks for that!). The words frightened me but I didn't have the words to say so or even the ability to feel frightened, I was numb to feelings, even the pain in my head felt like it was happening to someone else.

“Eventually I was discharged and went back home. For months and months I had the same banging headache but it felt different. As time went on I realised I didn't know how to 'be' anymore but I didn't have the words to convey it - my head was too wrecked.

“I didn't remember how I was before the meningitis but there was no help, no support. I'd been discharged, job done.

“For months I learned how to interact with other people by watching TV. I didn't tell anyone because I couldn't, it was impossible. I think I just wanted someone to ask me how I was, because I might have worked it out.

Just existed

“I knew something wasn't right but I didn't know what because I didn't understand. I couldn't think well enough to work out what was happening, I just existed. After six months at home watching TV, I learnt how to socialise again, almost from scratch. I’d watched so much Neighbours that a number of people remarked on my Australian accent for months afterwards.

"I still don't remember what I was like in social settings before the meningitis. There's a lot I don't remember to this day.

“I eventually found a job and went back to work but found myself making really silly mistakes, although I didn't know about them until someone inevitably brought them up.

"My biggest thing is numbers. I transpose them in my head so, for instance, 1234 becomes 1324. It wasn't great because we filed documents by order at work. Luckily, the others knew where to look if they couldn't find something I'd filed.

“After a few years, the mistakes became bigger and harder to reconcile. I know I made some big mistakes and I became a liability. I eventually became unemployable - who wants to employ someone who makes the worst mistakes and doesn't even remember making them?

Change in my brain

"This was in the days before neurodiversity and understanding mental illness, even though it was neither. It was an irreversible and catastrophic change in my brain that took time to manifest. It's not the only thing that has been impacted – there have been plenty of changes but I don't remember them unless I'm prompted by someone or something. That's how it is after meningitis. I forget things to the point that I forget they ever existed in the first place.

“I'm now in an online group with others who have had meningitis and occasionally someone will mention something and we will invariably all say 'yes, me too'. Everything is something that happens in between times of forgetting it happens.

“After 35 years I've learned to laugh about many things. I have a lot of difficulty talking to people still - that's a constant. When I get stuck, I just point to my head now and say, "Sorry, meningitis brain," as that explains everything. I've found I'm occasionally inappropriate - I'll laugh at the wrong time, swear, say the wrong thing (although I never mean to hurt anyone). It's something I've apologised for many a time and luckily, people have always been understanding.

Transform my life

“A few years ago I found Meningitis Now who have helped me to transform my life. I still get upset when I think about how much has been taken from me but I finally know I'm not alone, even if I have waited 35 years to be listened to and understood.

“I've also been able to help others who are much newer to the world of meningitis after-effects. This past year has brought me something I never thought I'd have, the peace of knowing I'm normal. I'm average. I'm not crazy, lazy, boring or stupid (I've heard them all to the point of believing them). That's worth everything.”

After accessing support from a Community Support Officer, Beverly completed a Rebuilding Futures Fund application for counselling and has since attended our online anxiety management course. The course was transformational for Beverly. Her CSO, Esme Lee says:

“This course has been a real eye opener for Beverly, and has allowed her to look at her life positively again. I am so proud of where she has come from. Our contact has developed from text messages to telephone calls as confidence and trust has grown.”

“Life after meningitis can be scary, but support is available for the journey, however long that may take.”

If you or a loved one need support please do contact our nurse-led Helpline on 0808 80 10 388.