Invisible illness...

We have both found one of the hardest things about this illness is the fact that we LOOK fine so people think we are fine. We do not have a broken leg to show. Instead, to the world, we look normal. But inside, we couldn't feel further from this. Any invisible illness is incredibly hard to deal with. Particularly if you are a good actor. People rarely seem to have sympathy for people who look fine so as well as increasing the dizzy person's isolation (and this illness makes you feel isolated enough as it is) it also means you often don't get the support you need.

People forget your limitations and presume you are fine in many situations when you are not. It gets tiresome to have to say "I actually find that hard" and by doing this, somehow the illness feels like it is really taking over one's life. Our advice is to (depending on what you think is right for you) not always pretend you are OK when you are not. This does not mean always focusing on the illness (as this doesn't help) but admitting you need help to those close to you, is an important step. Explaining to others that you do not feel good in a situation, also helps. Making people aware aids their understanding and helps you to feel more supported.

Goffman (1963) says "An individual carries a stigma if s/he is unable for any reason to fulfil society's sterotypic criteria for normality - if this deviation is obvious (eg: physical deformity) the person is at once 'discredited'. Failings that are less obvious or may be concealed (eg: vestibular problems) render the individual 'discreditable' in the sense that his/her identity is vulnerable. Whereas a discredited person must adopt a stigmatised identity - a discreditable individual may prefer the effort and risks attached to trying to 'pass' as normal to the frank stigma of admitting the attribute".

The invisible illness aspect can, believe it or not, actually sometimes be a godsend. We have found that in certain situations where we do not want people to know about our disability, the people in question have not suspected at all that we have a balance problem. We have both found that sometimes people not knowing, can sometimes be very refreshing and it gives us a break from being the "dizzy" person that we have been for so long. Once in a while, we think it is needed.

An article from VEDA's "On the level" magazine (Vol.21, No 4) says:

"As an invisible disability, an inner ear disorder can be frustrating to manage. A person may feel miserable yet 'look normal' to friends and family. Educating others about the illness can help them better understand the difficulties and consequences of having a vestibular disorder. Counselling or participating in a support group may help to deal with the confusion or secondary depression that often accompanies these conditions".

Lack of sympathy/support...

This ties in with the above. As well as the invisible nature of this being a big factor when it comes to sympathy/support from others, the chronic nature of it also has a lot do with this. People simply can't believe you can be ill for so long with such minimal improvement (we often can't believe it either!!). People either forget, don't ask because they presume you are now fine or have no idea with what you are living with. Either way, it's very isolating.

People also don't realise the dizziness is there all the time. Many think it's in spells which couldn't be further from the truth!

The dizzy person may also encounter people who think he/she is simply a "hypochondriac" who is "exaggerating" their illness. Move on from these people - they are simply completely unaware of your situation.

We have tended to rely on each other for support and this is why sites such as this, are so important. Unless they have experienced the same, no one has a clue about inner ear disorders. The key thing is to acknowledge and accept this and not to expect too much from people. Find a support group online if you need contact with fellow dizzies or contact us.

Goffman (1963) supports the above saying "an additional strategy which can help reduce the sense of personal insecurity which potential stigmatisation can induce, is to seek the company of what Goffman has termed the 'wise' ie. fellow sufferers". Cohen (1992) explains that this support is particularly valuable, not only because no shame or stigma is attached to the shared difficulties but also because the information they provide is perceived as more accurate that that given by the uninitiated.

Finally, choose one or two good friends (who are completely there for you) to discuss the dizziness/how you feel with. We have found this to be more beneficial than telling lots (we did do this to begin with) but found that we were disappointed if people weren't always there for support - relying on a couple of solid friends stops the feelings of sometimes being let down or isolated. It is also good from a CBT point of view as it stops you focussing on the dizziness quite so much

Am I going mad...?

The answer is no! The symptoms of inner ear dysfunction are so utterly surreal, that when we see objects moving and the ground jumping, both of us have had the thought "Am I imagining that"?. Of course we know we are not. But inner ear symptoms really do sometimes get you questioning. Once we had been diagnosed with an inner ear disorder, this pretty much stopped for both of us and we used the affirmation "This is only my ear, it's fine, it's nothing else" which helped. The key is to use affirmations such as this when you feel panicked and to remember that although this is life altering, it is not life threatening.


Both of us have felt extremely frustrated. We went from being one person to someone else overnight and everything we use to take for granted, was suddenly a real struggle. Emma in particular found that having to move back in with her parents and halt her career once finishing University, was an incredible blow. The feeling of being helpless and just having to "wait it out" until she feels ready to work full time and to move out, has been horrible. Isla had 3 young children at the time and found it very frustrating not to be able to do nice things with them at times. Both of us are young and wanting to do so many things and when you can't (and don't know when you'll be able to) is difficult. We have found that affirming to ourselves that we WILL get better during hopeless patches, has helped.

Another frustration is the fact that very few people have heard of Labyrinthitis or inner ear problems and the few who do know of it, are unaware of in a fair few cases, Labyrinthitis can go on and on. In a nutshell, inner ear disorders of any kind are not common knowledge.

What's happened to the old 'me'...?

As already mentioned, we both felt as if we changed overnight when we got Labyrinthitis. Not only did the world look different, we also felt we had changed as people as a result of having to deal with this illness. Simple tasks became difficult and we missed out socially. Because we have both been dizzy for a while, we often can't imagine what we felt like before so this is hard. We both strive for a recovery and tell ourselves this is just a rocky patch in life which we will overcome and our old self will reappear, stronger and wiser, than ever before.


There is a stigma attached to depression and although neither of us have experienced severe clinical depression, we have certainly had our rough patches. Of course telling people about your depression is incredibly difficult and we really only tell eachother and close friends about it. We know for a fact that anyone experiencing this would be superhuman not have some depression, so do not let anyone tell you otherwise.

Experiencing depression is not a shortcoming on your behalf. You have a right to feel this way. If you feel your depression is severe, seek medical help and they can either give you antidepressants or Cognitive Behaviour Therapy. We have found that our "down" patches pretty much coincide with a bad dizzy patch. This is reactive depression to horrible symptoms. All very normal so do not worry. With this disorder, you will feel that you are somewhat on an emotional rollercoaster.

For mild depression, telling yourself "It's ok to feel like this, I am doing very well coping with this disorder and I will be OK" can indeed help.

Inner ear dysfunction very commonly gives rise to depression.


We have both experienced anxiety with this disorder. With anxiety, comes "avoidance behaviour" which results in the dizzy patient avoiding situations where their symptoms are heightened. Both of us have found little tasks such as going to the supermarket a trial in itself and Emma recalls sitting outside in the car for 30 mins on one occasion just psyching herself to go in. This again, is normal when experiencing inner ear symptoms. Natural instinct is to avoid anything that makes us feel bad, so no wonder you have anxiety with an inner ear problem as you feel bad all the time! Cognitive Behaviour Therapy can help. We have both practiced techniques such as setting ourselves small tasks such as going into a shop and buying one item to begin with, then after a few weeks when we have practiced this a number of times and feel ready, building this up to a few items and a few shops aisles. The important thing is not to bombard yourself with too many tasks at first. Start off with small things, build up to more.

If you are invited to a dinner however and you are worried about it, don't feel you have to go, by all means don't avoid things in life BUT also ensure that you do not put yourself through things that are out of your depth and will make you feel worse physically/mentally. We have found that doing something that is too ambitious (the pub, the cinema) can often make us feel more depressed afterwards when we reflect back on how we felt.

It is crucial to remember that the key to recovery from uncompensated Labyrinthitis is to KEEP ACTIVE. This is often hard to comprehend as with most illnesses, it is the opposite! Your brain must experience the dizziness to rectify the problem so remember, that in moderation, doing things which challenge your balance/dizziness, are all helping compensation. Remind yourself of this when you feel dizzy and uncomfortable in a shop or similar situation.

It is worth remembering that anxiety/depression can be directly affected by damage to the vestibular system. See symptoms So this is often a reason why inner ear patients experience these emotions, as well as a result of coping with the disorder.

Reading up...

Now this is different for everyone, but we have found that reading up on the subject has helped us understand the disorder more and therefore deal with it better. Some people may find the opposite. Do what is best for you. We have also found that being more knowledgeable about inner ear disorders has helped us to communicate with the medical profession more successfully!

Other emotions...

The above are just a few of the emotions we have experienced, there are many more that you may be experiencing and this is very normal - the Labyrinthtis journey is a very emotional one especially if you've had it a long time.

Support Groups in the UK...

There is a Dizzy Support Group in Nottingham and the points of contact are Glen at: or Wendy at

Emma set up a group in Newcastle upon Tyne in 2008 called NE1Dizzy?

They meet four times a year, with the July meet-up consisting of a Balance Information Day, which attracts over 100 people every year. Meetings are held from 10am-12pm at the Education Centre, Freeman Hospital. All welcome.

Anyone willing to make a donation to either group - it would be v much appreciated. Do email.

We have also heard about a recent Support Group in Yorkshire. Details can be found at:

Contacting other "dizzies" in the UK...

Below is a link to our GuestMap which is for UK Labyrinthitis sufferers to post their location and email for others to contact them. As we have already discussed, finding people who are going through the same thing can be a real blessing. Of course, be sensible when meeting people - get to know them via email/phone well first.

PLEASE NOTE: Fill in the boxes and in the comments box, JUST PUT YOUR NEAREST TOWN - don't put any other comments (the guestbook is for people's stories/experiences). If you find someone in your area on the map, simply click on their icon and note - and their email etc will come up. I hope that this facility helps some of you out there.

Free Guestmap from Bravenet
Get a Free Guestmap

Poetry from another sufferer...

This poem was written by Adam Jacobs who was hospitalised with Labyrinthitis and 2 years on, still suffers. This poem was written when he was discharged from the hospital.


Clocks stalled one hour, didn’t change a thing
My symptoms and I, more than a casual fling,
Days may be shorter, but mine alas still so slow
Disempowered, aching, trembling, which way to go?

Battling to watch TV, read or even write,
Determined to succeed, not to give up this fight,
Cutting back the drugs, withdrawal soon kick in,
To stay on them would alleviate pain, but a cardinal sin.

Is so lonely, when you can’t take the sound of noise,
Impossible to have conversation or play with birthday toys.
Having to reject phone calls, sleeping to pass time,
Now back at home, friends presume that I’m fine.

Utter frustration that this is not the case,
Want to live again, shave the beard from my face,
Acceptance that I’m back to the start, has got be done,
Only able to manage tedious walks in the winter sun.


Head not in melancholy, can’t find a peaceful place,
Contorted, constricted, despite my brave face.
Waiting and hoping the torment will pass,
Minute sounds irritating like wet fingers on glass.

Would all be so easy if the world silenced in mime,
So hard to focus or become active to eek away the time
Must stop watching the clock or trying to kill off the hours
Nor wither away like when the cold hits the flowers.

Whether pain is what I’m experiencing, I am unsure,
Uncertainty of a penalty taker, not knowing if he will score,
Get me through tonight, unpredictable is tomorrow
Praying for not another day of unequivocal sorrow.

Huge amounts of suffering, I’m surely now due a break,
A few hours of emancipation is all it would take,
I know this will happen in the coming few days,
Just need to keep existing through this solitary phase.


Nagging pains deep into my ears,
Legs wobbly like I’ve had one too many beers,
Head muzzy, tight, stuffed with cotton wool,
Temper more fiery than a provoked Spanish bull.

Brief sparks of hope are distinguished with aplomb,
Evoke pity and fear like I was strolling the Somme,
This cyclical nature, bit better then much worse,
Feels like I’ve been burdened with an unbreakable curse.

So hard to understand as superficially I appear fine,
Complex vestibular disorders bear no easy visible signs,
Am I going mad? Is there actually something wrong?
Onlooker’s minds must be chanting this questioning song.

Challenging your own thoughts, is it all in your mind?
Looking for answers to questions that you’re not going to find.
Embarked on this quintessential journey of torment and strife,
Anxiety slowly saps all energy from a once vivid life.

Can’t help but feel confined, marginalised and alone,
Itching to rant, scream or simply to have a moan,
But what will this achieve? Little but to succumb to the condition.
Get better and also spread awareness is now part of my mission

Disorientated, lost,
Inside my mind, the solitary
Zone of incapacitation
Zero improvement in week
Y has this happened to me?


Head demonically crushed like ice,
Unable to escape this invisible vice,
Darkness my friend, shooting pains run amuck,
Building works started next door – just my luck.

Stoic acceptance but sound sensitivity remains
Last few weeks, precious few gains.
Pressure on forehead, weighing down my right eye,
Shoelaces on my trainers, a struggle to tie.

Can’t write any more, need to somehow escape,
Collapse, roll into a ball, silence is bliss,
Being normal, 21, is what I so miss.


Battling to pass every minute,
Incapacitated, but push to the limit
To be told I’m not doing enough
Doing all I can, when feel so rough

Head seems like is about to explode,
Persisting symptoms, an emotional load
Too many people, too much of a toll
Just to feel comfortable, the ultimate goal.

Blustery November night, each tree does sway
As does my head, exactly the same way

Online 'Labyrinthitis Help'...

A visitor of our website has created a forum for Labyrinthitis sufferers to chat - it can be found at:

Medical Help...

The Neurotology department Isla and Emma saw was: Dr C Agrup, Neurology B (Hearing and Balance), Neurotology, 4th Floor, Queen Mary Wing, The National Hospital of Neurology and Neurosurgery, Queens Sq, London, who are excellent. We know of a Neurotology department at Leicester Royal Infirmary too but are unaware of any others in the UK.

We are however also aware of customised VRT being offered at the Balance Services department at Royal Surrey County Hospital in Guildford.

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