Tuesday, May 24, 2016

Invisible Illnesses

So I'm sitting at home feeling completely wiped out. My head has been aching on and off for the past week, my legs feel as if they are going to collapse beneath me, my balance isn't so good, and I've had a build up of mucus over the past fortnight which hasn't dissipated, and is making me feel mildly nauseous from time to time. This has caused me to not feel like eating, and I've subsequently lost some weight and am feeling perpetually cold, which probably adds to my general feeling of tiredness.

To look at me, you wouldn't think there's anything wrong. And I'm ok to continue to work as it's not too physical. But I've been feeling ill for about 2 months and it's beginning to get me down. I went to the doctor about 2 months ago, with a hacking cough and was told that I had a post viral infection that could linger about 4-6 weeks, but otherwise I was fine. I think I'm going to have to go back to the doctor for a further check up.

But while I'm sitting here wallowing in my own situation, it makes me think of the vast number of people with invisible illnesses who suffer on an ongoing basis. Mental illnesses are an obvious example, but there are physical illnesses which have no tell tale signs of their existence, such as diabetes or epilepsy. Sufferers of chronic illnesses such as M.E or fibromyalgia will often show no sign of their condition, while breathing and circulatory diseases may also show nothing symptomatic to the rest of us, unless we catch the sufferer at a bad time. There is a surprisingly long list of illnesses that fall into the category of invisible types.

The term Invisible Illness was only coined in 2000 in a book called "Sick and Tired of Being Sick and Tired" by Donoghue and Siegel. Although chronic syndromes were known well known before then, acceptance of these conditions by the wider public has often been poor. It's hard to convince someone that you feel pain, can't concentrate, are too tired to do things, or just can't bear the heat or the light, if they can't see anything wrong with you. The public clamours for evidence, a cast for a broken bone, aids for movement such as walking sticks or buggies, or physical signs of treatment, such as shaved heads, or scars. Think about when you've seen someone with a disabled sticker in their car, park and then get out and walk as if normally. Is there ever a question in your mind as to whether they should have that sticker? People with invisible illness suffer from these types of stigma.

A shocking figure that I recently discovered was that nearly 1 in 2 adults in America suffer from a chronic medical condition, and over 95% of people with a chronic medical disorder suffer from an invisible illness. So that's a lot of people suffering without us seeing any outward evidence of this. There are also going to be some people not admitting to suffering from an illness that they can't see, such as depression, or chronic fatigue. In a survey in Australia in 2012, 83% of people with a long term health condition felt their general health was good, very good or excellent. We must be a hardy bunch!

There is growing awareness of invisible illnesses. The Victorian Government have pledged funds to the mental health sector after the next election, while opposition leader Bill Shorten recently stated that the health of the nation was Labour's priority. But of course the greatest advocates are those who are sufferers, or carers of sufferers themselves. While each illness has it's own forum and support group network, an excellent umbrella site is Invisible Illness Awareness Week and their Facebook page. My own short experience of suffering with an illness with no apparent symptoms, of feeling tired for no apparent reason, has given me greater empathy for those who have to endure their suffering for the rest of their lives. It affects a person not only physically, but psychologically in the form of morbidity and depression, as well as a lack of confidence, and often a yearning for reclusiveness or rather a desire to withdraw from social engagements.

If you have a friend/family member with an invisible illness, or a very visible illness, then the best thing to do is to find out what they want and help them to achieve it, to be there when they need you and to be sensitive when they want space. Remember, they are suffering, not you, and sometimes they will want to vent anger, frustration, sorrow and self pity, alone or with someone, or just say "Fuck it" let's go do something. Being the person that is there to be shouted at, cried on, moaned at is only one half of the coin. You will also be the person bringing joy, laughter, and life to that friend of yours who is suffering. And most importantly, just because you can't see someone's symptoms doesn't mean they are not there. Showing understanding, accepting what someone says is the truth, that they are too tired to get up, or that they are in too much pain to get dressed for example, is maybe all that a person with an invisible illness wants. Someone to believe in them, and still value them, for the person they are.

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