Invisible Illness Awareness Week 2011

….I’m displaying a really cool badge in my RH sidebar which says….

I am blogging this for Invisible Illness Awareness Week 2011.

This year’s slogan is “DEEP BREATH START FRESH” That’s kind of what you do when you have asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult to control chronic asthma, plus I have  a diagnosed wheat gluten allergy and suffer from rotten migraines.

But you, reading this, may also have an invisible illness of your own. One that affects every part of your life, just as my illness affects mine-perhaps, even more so.

  • How many times have you felt that you were the only one?
  • That people didn’t understand you because they didn’t know you?
  • That people thought you were making it up?
  • That people just assumed you were ok because you looked ‘alright’?
  • That being ‘well’ was something you’d never be, or you’d never feel?
  • That those around you-your nearest and dearest, couldn’t cope?
  • That you couldn’t cope?

Probably multiple times, and most likely, most days.

Life with an invisible illness harbours a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.

Therefore, because your illness is chronic, incessant, unending, unstopping- alas, it’s invisible.

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.

Back in February 2010, I wrote a blog post entitled False Impressions-Do you Look sick?. In it I wrote this:

When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look?

So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations-do we sympathise, empathise or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.

I suppose, nowadays there are aspects of my illness which make it a bit more obvious.

For starters I carry a POC (Portable Oxygen Concentrator)

Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.

But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 12th-19th 2011, many people worldwide are joining together to speak out and speak up for those of us who suffer form a Chronic and Invisible Illness. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.

The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February 2010 blog post, how should a disabled person look?

Here is something else that you might or might not know about my invisible illness:

This is a photo of  one month’s supply of my drugs and food items. So every 4-5 weeks this lot arrives in multiple bags and I get the chore of piling it all into my kitchen larder!

Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic Invisible Illness can be like. How many people, for instance would know that about me, if I didn’t blog that photo?!

So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my illness, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before. I definitely live a richer, fuller, deeper life now, with my chronic invisible illness. Plus I have the closest of relationships with my Partner, my Family and my Friends.

And importantly, I have learned one major thing in all my illness and suffering…..

….I have learned the true meaning of compassion….


6 Responses to Invisible Illness Awareness Week 2011

  1. Elisheva says:

    Really nice post, Sus. Straight from the heart. I look forward to reading other people’s posts on it this week (tho why Invisible Illness Awareness Week begins on a Monday is beyond me ;))

  2. kerri says:

    Great post, Sus! Will you be posting more on the subject this week? I hope so. You can tag your posts on twitter with #iiwk11 so that people can find them, too! :]

    Thank you, as always, for sharing! ❤

  3. Becca says:

    Really good post! I really like the ending; despite all the difficulties and frustrations that come along side an invisible illness it does also bring with it compassion and tolerance towards others so often. x

  4. M. Bowen says:

    Inquiry, please contact me.

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