Invisible illness

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We both found one of the hardest things about this illness was the fact that we LOOKED fine, so people thought we were fine! We did not have a broken leg to show. Instead, to the world, we looked normal. But inside, we couldn't have felt 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.

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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.

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Goffman (1963) says:

 "An individual carries a stigma if s/he is unable for any reason to fulfil society's stereotypical 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".

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

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

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"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".

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Lack of sympathy/support

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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!

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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.

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We 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.

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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

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Am I going mad...? 

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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.

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Frustration

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Both of us 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 felt ready to work full time and to move out, was horrible to navigate.

 

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 were young when we fell ill and wanted to do so many things. When you can't (and don't know when you'll be able to) is difficult. We found that affirming to ourselves that we WILL get better during hopeless patches, has helped.

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Another frustration for us was 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.

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What's happened to the old 'me'? 

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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 were both dizzy for a while, we often struggled with imagining what we felt like before - this was hard. 

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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 told each other 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.

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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 found that our "down" patches pretty much coincided 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.