So you know someone who has been diagnosed with inner ear dysfunction as a result of Labyrinthitis?

 

From reading this website and from talking to the dizzy person, you will have realised that this disorder is one of a kind in so many ways. As mentioned earlier, we have both found this disorder to be horribly isolating. People lack sympathy for an illness where you look fine and they also lack sympathy for an illness which is so never-ending. The following are things that we have found the most helpful and are worth considering when supporting your dizzy person.

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• Ask the dizzy person how they feel – what their dizziness is like. We found that our symptoms were literally so freaky, knowing no one else understood them, made us feel very alone. The people who asked us in depth what our world felt/feels like, made a world of difference. Someone simply taking time to listen and to understand how we were feeling, helped enormously. Some people don't know what to say to dizzy people especially when they've suffered for a long time - but you must remember the dizzy person is not expecting you to find a solution - just paying an interest and offering your support is enough. This disorder is not a terminal one so you can be positive about the future for your dizzy person or you can tell them how proud you are of them for coping. As mentioned above, you could take an interest in their dizziness and learn what it feels like or you can remember and ask about hospital or doctor appointments they need to attend (or ask if they'd like you to go with them). There are many things you can do to show your care. Remember - Little things mean a lot.

• Never say you know how they feel as unless you’ve had an inner ear disorder – you don’t. The dizziness you feel with such a disorder is entirely different to other dizziness. It is frustrating for the dizzy person to hear people say they know what their dizziness is like. If you want to have a glimpse at what your dizzy person feels like, imagine you are on the roughest ferry crossing imaginable and then you go on an all-day funfair ride and the effects from both never wear off! Add to this tiredness, nausea, "brain fog" and ear symptoms! Oh, and not to mention the depression, anxiety, isolation, frustration...

• Recognise when they need professional help. Encourage them to talk about their feelings. Explain they are not abnormal for being depressed or having anxiety. It is uncommon not to have one of these when dealing with this disorder for some time.

• Keep their spirits up - send them a card, buy them something, take them out to lunch - something to cheer them and to let them know you are there for them and that you care.

• Appreciate that this disorder is invisible to you and others. Recognise they probably feel far worse than they look.

• Don't leave them out. Encourage them to do things yet be aware that they will not want to do anything that is too ambitious for them. You do not want them to become isolated yet you must respect that many things are tricky for them. Encourage them to do small things at first – a walk round the block – build up to more gradually. If you go out with them somewhere, let them know you will leave with them at any point if they feel too dizzy and that you do not mind doing this. Dizzy people do not like to feel like they are a "burden" and they also like to know they will be looked after in situations like this.

• Praise the dizzy person when they manage something however bad they have felt.

• Pinpoint their improvement as it is very difficult for the dizzy person to see their own, especially as the road to recovery for this disorder is such a slow one.

• Remember that people with inner ear disorders need more, not less, help and support the longer they have the problem. After months/years of having the problem, we felt/feel more anxious/depressed/disheartened (the list goes on) and therefore need more help than at the start of Labyrinthitis.

• Most importantly, Let them know you are there for them to talk to face to face or to ring, whenever they may need you. And let them know you are there for as long as it takes. Consistency is important - many dizzy people think people forget about their problem after a while or get fed up with it, so make sure they always know you're there by constantly reinforcing this.