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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. 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. Frustration... 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.
Depression...
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.
Anxiety...
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: glen.swanwick@ntlworld.com or Wendy at Halesbkw@aol.com.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: http://www.yorkshirebalancesupportgroup.org.uk/ 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.
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.
Home
Clocks stalled one hour, didn’t change a thing Battling to watch TV, read or even write, Is so lonely, when you can’t take the sound of noise, Utter frustration that this is not the case, 2. Head not in melancholy, can’t find a peaceful place, Would all be so easy if the world silenced in mime, Whether pain is what I’m experiencing, I am unsure, Huge amounts of suffering, I’m surely now due a break, 3. Nagging pains deep into my ears, Brief sparks of hope are distinguished with aplomb, So hard to understand as superficially I appear fine, Challenging your own thoughts, is it all in your mind? Can’t help but feel confined, marginalised and alone, Disorientated, lost, 4. Head demonically crushed like ice, Stoic acceptance but sound sensitivity remains Can’t write any more, need to somehow escape, 5. Battling to pass every minute, Head seems like is about to explode, Blustery November night, each tree does sway Online 'Labyrinthitis Help'... A visitor of our website has created a forum for Labyrinthitis sufferers to chat - it can be found at:
http://dizzytimes.com/ 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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