The invisible after effects of meningitis

August 2019

Having meningitis can be traumatic event. On top of recovering from a very serious illness, you may not feel that you are the same person as before. Although your friends, family and workplace may be sympathetic at first, if you look better and have no obvious physical symptoms it can be isolating, and you may feel that nobody understands what you are going through.

This experience is unfortunately all too common for people who have contracted the disease. The unseen after effects of meningitis can be very hard to live with or understand. There is rarely a specific time frame to recovery, and in many cases medical professionals cannot give a definitive answer as to whether these hidden effects will ever go away. This can be upsetting for you and your family and it is important to find some individual support.

Neurological symptoms such as persistent headaches, memory problems or finding it hard to concentrate are very common. We generally know ourselves quite well and can quickly spot when we are not feeling right. Changes to manner and temperament are common, and survivors of meningitis can report getting irritated quickly or not having the same level of resilience to stress. These ongoing symptoms are usually a reaction to the inflammation of the brain, caused by the infection, which can cause permanent or temporary issues.

Talking to someone can help you make sense of your experiences. Our helpline is here to support you as you deal with life after meningitis. Call for free in the UK on 080 8800 3344, Ireland 1800 41 33 44, or email helpline@meningitis.org.

 

Some survivors of meningitis may even suffer from seizures or epilepsy. If seizures are not something you’ve ever experienced before, it can be scary both for you and your family. It’s important to let people know about this, such as your workplace, or the DVLA. Make sure your family or colleagues know how to help and always discuss any concerns you have with medical professionals.

A common “unseen after effect” of meningitis is sight and hearing problems. In fact, in the UK, meningitis is a leading cause of acquired deafness. Approximately eight percent of meningitis survivors will have some form of permanent hearing loss. Tinnitus, deafness, ear pain, glue ear, or middle ear infections are also common place. Less commonly, damage to the optic nerve can lead to sight loss or sight changes, double or blurry vision. Your speech and balance may also be affected. In daily terms, these after effects can be hard to live with, and may mean that you need to be cared for. It is important that you reach out for support around any of these symptoms.

Losing independence can be very hard to deal with. You may notice that you feel anxious and/or depressed when recovering, and you may begin to worry about symptoms of illness more than you did before (this is known as “health anxiety”). This is only natural after such an event. It’s important to remember to take each day at a time and try not to worry about what the future holds in terms of recovery. Speak with your friends, family or GP and let them know how you feel if that’s right for you. Please remember that there is no text book recovery, and each person is individual.

At Meningitis Research Foundation, we have 30 years’ experience in providing emotional and practical support to people affected in any way by meningitis. We also run a dedicated befriending service to put you in contact with someone who has been through a similar experience. Please reach out and make contact with us if you are struggling – you do not have to feel alone.

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Membership and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

Tel: Helpline UK 080 8800 3344 Ireland 1800 41 33 44

About the author

Cat Keeling
Support and Membership Manager
My name is Cat, and I have recently joined MRF as Support and Membership Manager.
 
I lead a very knowledgeable, dedicated and experienced support team. We provide support through our Helpline over the phone, by email and meeting face to face. We organise MRF events which gives members the chance to meet and give or receive support. We also oversee the Befriending service, Ambassadors service and we give talks around the country highlighting the work that MRF do and the support we offer.
Tel: 0333 405 6267

Other blogs of interest

MRF Evidence and Policy Manager (Prevention), Claire Wright, discusses the pros and cons of making vaccination compulsory in the fight against meningitis and septicaemia
MRF Information and Support Officer, Katherine Carter reports on our latest family day for those affected by meningitis and septicaemia
MRF investigates the impact of social media on meningitis survivors.

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