Invisible Illness Awareness Week

….I’m displaying two badges in my RH sidebar which say….

I am blogging this for Invisible Illness Awareness Week.

Do you have an Invisible Illness? Of any kind? Do you look good but feel rotten?

Those of you who know me, know I suffer from a severe form of difficult to control chronic asthma.

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, 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 13-20 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 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….


4 Responses to Invisible Illness Awareness Week

  1. Emz says:

    Loved this post!!
    Inevitably at school I hear the odd ‘why does she need that scooter?’ and I always butt in! Even when one of my friends said it! Shocked me! It’s just…because she does! They don’t necessarily need to question it..
    But I suppose in a way it is better not to look ill, and to carry on with whatever life throws at you, although the parking badge thing?!I mean come on!
    And scootie is pretty cool ;D and ET sits there purring away happily…
    Emz Xxxxxxx

  2. Elisheva says:

    What a great post! I tend to feel either that people don’t understand what it’s like OR they underestimate me and don’t expect me to be able to do things I am able (and work extra hard!) to do.

  3. Amy says:

    Agreed with the above. I love this post! And I think Invisible Illness awareness is such an important reminder to everyone – people may not “look” sick or act sick, but you never, ever know what is going on that you can’t see.

    Really, it’s a good metaphor for communication and understanding in general, even unrelated to health issues. It’s very easy to see people or families that seem to be perfect, to have it all, to have no major problems or obstacles in their lives and to compare your own life, which will never measure up. Yet everyone’s struggling with something, and the face they present to the world is not the sum of everything inside them. (or maybe just *I* need the reminder, lol)

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