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Invisible Disease Awareness Week

12/09/2013 13:41 | Updated 11 November 2013

From the 9th till 15th September 2013, it is 'National Invisible Chronic Illness Awareness Week'. You might not have heard of this before, and may well be asking what is an "invisible illness"? There are many illnesses that show few signs outwardly, and yet can be highly debilitating, with nasty symptoms and an on-going regime of medications and treatments. An invisible illness, is where a patient is suffering, despite the fact they may externally appear totally healthy and look well. This false impression often leaves family and friends puzzled, unsure of what to say, how to handle the situation, being unsympathetic and in some circumstances callously doubting there is anything wrong at all.

You may know someone who has an invisible illness (asthma, Gaucher, Crohn's, anxiety, bipolar, schizophrenia, depression, diabetes, lupus, arthritis, cancer, heart disease, epilepsy, autism, migraines etc.) It's a daily struggle being chronically ill, in pain, feeling sick on the inside while appearing normal and healthy on the outside, creating a huge problem which can be very frustrating. Try and imagine for one moment feeling terribly ill, diagnosed with an illness and yet no one realises or shows any concern.

If you saw a person in a wheelchair, or with a walking frame, you would immediately know the individual is disabled or suffering a particular disease. It's not always so easy to spot and empathise when from the outside you can't see anything is wrong. Just because someone looks good, doesn't mean they are well. We are all guilty from time to time of putting people in neat pigeon holes, categorising a person according to our perception and possible lack of knowledge regarding a particular disease.

People have preconceived ideas of what an ill or disabled person should look like or how they should behave. These preconceptions are often wrong. I presume the number one criteria is being in a wheelchair - after all if you can't walk, then you MUST be disabled. However it is not as simple and clear cut as this, and there are many chronic patients suffering an array of life changing diseases, where they appear like everyone else. Never judge a book by its cover! It's not a matter of an ill person giving a false impression of being well, but the other way around. Only those diseases where visually one can see a physical disability, do people immediately acknowledge the person as being ill, since they fit neatly into their prejudiced category.

This biased view is both irritating and upsetting, particularly when someone says to me: "but you look so well". I wonder what I'm supposed to look like? I shouldn't need to wear a badge or have a neon sign above my head, indicating how I suffer daily, am in constant discomfort, take strong pain killers for chronic bone pain, endure extreme fatigue, and am just about holding it together. But what really throws a spanner in the works is that I do not fit the mould of 'looking disabled'. I am by nature a cheery person, my jovial exterior and positive attitude confuses people, and to top it all, I have the audacity to smile! This is not what people or even doctors expect to see when hearing I suffer from Gaucher and Parkinson's disease, and they have a hard time understanding how I can remain cheerful in my situation.

On a good day, if I have make-up on, dressed up to the nines and have some energy, my medications are working, at a glance you would never dream I have anything wrong with me. It is on these rare occasions that people sometimes say the most disparaging thoughtless things. Take a look at this YouTube clip http://www.youtube.com/watch?feature=player_embedded&v=vmOXBY3HnYQ which clearly illustrates what someone has to put up with when suffering an invisible illness.

Stay open minded, and if you have a member of family or friend who has an invisible illness, find out more about the disease they suffer from before judging them harshly. Education and greater awareness is high on my list of priorities, and I urge anyone who lives with an invisible illness, to speak out and educate those around you. This week is your chance to make a stand; don't stay invisible!

You can all show your support for National Invisible Chronic Illness Awareness Week by leaving a comment and I thank you on behalf of all those suffering invisible illnesses everywhere.

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