World AS Day 2012: Defining Awareness is Literally Awesome!

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It is that time of year again. Yep, May 5th is World AS Day!! Horrah!

So apart from wearing your multitude of AS wrist bands, while spamming social media sites to ask all to celebrate this special day, what does it actually mean? Why do we have World AS day? Well I guess you have come to the right place, because I might tell you, in a roundabout way. 🙂

In today’s modern age it seems to be the common social practice to misuse or overuse certain words and phrases. Like totally!! I mean it’s literally killing me how the English language is sometimes used, ya know what I mean? Seriously! The English language is awesome! So why not use it correctly?

One word I have noticed being used a lot in recent times is ‘awareness’. It’s what World AS Day is all about right?The word ‘awareness’ is becoming fairly synonymous with chronic illness. But what does it truly mean? We always harp on about how we need to raise awareness, but to what extent? At what point is someone classed as ‘aware’ of an illness like Ankylosing Spondylitis?

I’m not saying that the word ‘awareness’ is often over or mis-used, but I do think we should understand its true meaning if we are going to achieve our aims. For instance; telling all your twitter followers, or your friends on Facebook about the latest AS project is not likely to make many, if anyone at all newly aware. Mainly because they are likely to already know you, in which case you will have shared your story, and made them aware that this invisible disease exists. And let’s be honest, when people are spamming your twitter feed or timeline it starts to get rather irritating, regardless of the cause and the genuine good nature of the poster. Which might even put people off looking at what you’re trying to promote.

Even wonderfully amazing and literally awesome blogs like EndlessTrax do not do a great deal to raise awareness. Again if you think about it, you are all reading this because you have AS ,or know about AS. There are people who find this blog who have no prior connection to me, or our AS community (and they do find me I checked!), they too probably already know the words Ankylosing Spondylitis, or the search engines wouldn’t have suggested EndlessTrax to them, would they?

There are many projects out there doing wonderful things for AS. They bring sufferers together, forming new friendships and providing a community support. So is awareness just for people who have never heard of AS? Or can we AS sufferers become aware too??

In the view of Neuroscience, awareness spans across various levels. Basic awareness (primary consciousness) is the ability to integrate sensations and stimulus from the environment into one’s feelings, which then guide our behaviour. Being able to express these feeling, describe them, and understand the link between your environment and behaviour is a ‘Higher’ form of awareness. This corticol involvement (from the cerebral cortex) in your consciousness is probably better known as self-awareness.

So whats this have to do with raising awareness?

Well I asked before if people who already have AS can become aware? The science would suggest we can. By learning how our environment and other factors affect our behaviours, we evolve our primary consciousness from our illness, and develop a higher awareness and understanding of our AS’s effect on our behaviours. Without this we are not able to change our behaviours. By changing our negative behavioural responses we will be able to manage our condition better in the long-term. Ultimately effecting our overall happiness and well-being.

Now we still haven’t really defined awareness yet. I could have just copied a random definition from a book, or from the beloved wikipedia. But I won’t.

I want you to share what the word ‘awareness’ means to you. What is its significance? Is awareness for us all, or just for the people who have never heard of AS? Could it really just be an overused word? But more importantly I want to know, how are you spending World AS Day? What does this day mean to you?

13 Replies to “World AS Day 2012: Defining Awareness is Literally Awesome!”

  1. Pamela O'Hare

    What does this day mean to me? Living through another day of pain and suffering just like any other day.

  2. The Feeding Edge

    Good question Ricky! I create and implement awareness projects – to me that means doing something that will hopefully attract interest outside our community. I do this for the reasons you mention – to have more people know about AS we need to find ways to communicate to people who don’t have the disease or know anyone who is affected by it. I hope that the projects I develop work to do this because my first goal in increased knowledge of AS and my second is working to support organizations who will help us find a cure on day. – Jenna

  3. sfdegraff

    I, too, have puzzled over the meaning of “awareness” and its ubiquity among patients with chronic diseases. Surely, my Twitter friends know of AS and our common struggles; they are aware. I am also consciously aware of how my behavior and environment effect my symptoms. What are we asking of those who are not aware?
    If everyone on the planet knew of AS and what it means to those diagnosed, would we still need “awareness?” Is this our goal, for everyone to understand our daily struggles and sympathize? What of the other chronic diseases and causes seeking awareness? Should we all be “aware” of everything? Or is my disease or cause more important than another’s? Are we just asking to be considered special?
    Or is “awareness” really just a way for an individual to be acknowledged as separate from a larger group, all of mankind, and part of a smaller group, those with whom we share something? Is “awareness” merely social? This makes more sense to me. Sometimes, I want to be with my own kind.

  4. Tosha of Bottled Time

    I am one of those non-AS people who found your blog and I stuck around because- well you’re literally awesome.

    Although I don’t have AS, I do have multiple other chronic conditions. I went years being misdiagnosed, which is a pretty common occurance in the chronic illness world. So part of awareness for me is getting information out there so that others know about these diseases and we can hopefully shorten that timetable. There is also some truth to awareness and research funding being linked. Much more research is needed, so making at least the name of an illness known is important.

    However, I must say, the biggest part of awareness days for me is the idea of support. Especially with invisible illness, so much of what we go through is hidden from most of the world. Not only is an awareness day a time for people with that illness to come together and say, “You are not alone, I get it,” but it is also a time for them to stand together and say to the world, “This is what we are living with.” And people, who often don’t know what to do to show their support, can easily show that they care by taking some time to learn something about the illness and celebrating the day.

    So, to all of you with AS, today I celebrate you. Happy World AS Day.

  5. Livid Spondy

    A great blog post as usual, Ricky. You asked some great questions which prompted me to think about what raising awareness of Ankylosing Spondylitis actually means to me.

    To me it is important that we try to reach those people who have never heard of AS. It is also crucial to help increase understanding of AS amongst those we love and hold dear. Not all families truly understand (how could they fully understand it if they don’t experience it themselves?). Additionally, I think it is important to raise awareness/understanding of AS within various government departments so that we can shape policy: the much maligned cliche/phrase “joined-up Government.”

    Even more essential than the aforementioned, I feel, it is incumbent upon us all as AS patients to raise our own awareness of our disease and to continuously educate ourselves about the latest research, best practice with relation to exercise and other issues too numerous to list here. To my mind this feeds back to being a responsible Spondy patient and a part of the natural quid pro quo of the doctor-patient relationship.

  6. Endless Trax

    Thank you all for your feedback so far.

    I’m very pleased that I have made some of your think and question what awareness actually is. I’m sure that is no surprise to most of you, as I often like to write thought provoking posts.

    It’s already clear that ‘awareness’ already means different things to different people. I hope we can get a few more ideas and views, so we can come up with a consensus.

    Oh and…….Happy World AS Day to all 🙂

  7. Juliette Wills

    I’m trying to bloomin’ well do my bit but stupid Twitter won’t work! I’ve been popping back and forth all day to no avail. Can’t re-stupid-tweet, can’t say, ‘Buy my book!’, nothing *shakes fist*

  8. Gillian Eames

    l campaign as much as l can to reach out to people who have ankylosing spondylitis and to people who have never heard of ankylosing spondylitis . l share information that l feel will be usefull to fellow AS buddies. The most important thing to me is that we should support each other worlwide as it is only us with AS that know what our lives are like . So l believe no one better can raise awareness than us that have the condition . Its been great on twitter today to see us all come together worlwide and promote AS x

  9. Health/Fitness/Wellness

    Great post Ricky and I share your sentiments exactly. A few AS friends and I had a very similar discussion quite a few months ago, regarding the numerous and endless “awareness” projects associated with AS, at some point you do begin to wonder how much of these awareness efforts extend beyond those who are living with the disease. Like you, I have a very diverse group of people who visit my blog in search of information, some healthy, some living with other conditions and diseases and of course those who have AS. Also as you mentioned, there are many amazing people who’ve done a wonderful job in blogging about AS and those who focus on educating others about the disease itself, Like you I prefer to focus on providing information that empowers sufferers, information that they may not be “aware” of, information that they are so desperately in search of during the first stages of diagnosis. One area that is high on my list is a positivity and the importance of maintaining a positive mental attitude, in spite of living with AS. I couldn’t agree more with what you’ve so eloquently stated here: “changing our negative behavioural responses we will be able to manage our condition better in the long-term. Ultimately effecting our overall happiness and well-being.”

  10. countrynana

    Hello.. I was diagnosed with AS several months ago, although I’ve suffered from it for years just took years of doctor appts to actually get a solid diagnosis. As far as your question into awareness.. for me I have gained almost ALL my “awareness” of this debilitating disease from the wonderful people who blog about the illness, and the “faces of AS” site, of which I am now a face as well. My Rhuemy giving me the diagnosis didn’t tell me anything about the disease he’d just diagnosed me with. Told me and then proceeded to say his nurse would be in to give me my receipt and make a follow up appt. Wow! Not even a pamphlet!! No info from him so I went to the computer and happened upon the Hurting but Hopeful site and then from there found other links and so on… I proudly wear my “faces of AS” bracelet and its quite a conversion starter! I find myself educating people with as much info as I can give .. everyone form grocery clerks to our local library staff! But, my most important thought on awareness is like that old saying..”charity begins at home”_ Well, for me so to AS awareness. I’m a 49 y/o wife, mother, and Nana. My family is amazing, all of them great, caring compassionate human beings. However, since the diagnosis my daughters seem to be trying NOT to talk to me about, care to learn and educate themselves about, or even help me when I might need them for a task I have great difficulty with. I don’t think they are heartless, I just think they don’t want to deal with the fact, mom has AS. I’ve always been known as “super mom”! So, my thought is they can’t deal with they choose to ignore it. Gosh, wish it were that easy for me. So, in conclusion I would say, the more people we can tell, educate, and share our own personal AS stories with, all the better. In my experience, the medical profession doesn’t even know enough to educate the people they diagnose. However, I stand by my earlier sentiment that in order to achieve awareness… it needs to be first and foremost by those closest to you..aware”ness” begins at home. :0)


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