A response to Invisible Illness week: Promoting “Awareness”

Here is the first GUEST POST contribution for Stoma-licious. A response written by my beautiful mum Vivienne to my recent post and those of others following invisible illness awareness week.

I am lucky enough to be able to say that I do not have any illness invisible or otherwise – unless of course you count my slowly advancing arthritis which has recently caused me to wear a ‘moonboot’ on my left foot to keep it immobilised and address inflammation and associated pain around the base of my toes. Hardly invisible but interesting in that, when people asked “What happened?!” with excitement in their voices, the last thing they wanted to hear was something relatively mundane like arthritis. The response people seemed to enjoy most was something about a fall from my Harley! Something to which they did not need to respond with any seriousness.

You see, it is my belief that people don’t really WANT to know. Some people didn’t even notice my glamorous boot and those who did ask probably did so largely through some sense of obligation, because it seemed like the right thing to do. And what did I prefer? Of course I needed people to understand that there were things I couldn’t do, or could only do slowly with my boot on, but I preferred not to be noticed, not to have a fuss made, not to need to provide any explanation.

Please don’t misinterpret what I am saying: I certainly don’t look upon the world as a place filled with unkind, uncaring, self-centred people – far from it. I believe there is inherent goodness in all of us, that kindness is everywhere and that we inevitably get back what we give out. I also believe that many of us are so busy and stressed with life in general, that we simply do not make the time or allow ourselves to be open to the needs of others, to even be aware of those needs. And so it is that our needs, our pain, our illnesses, seem sometimes to be invisible.

I have long been a fan of Stephen Covey and his seven habits (actually there are eight now!) the fifth of which suggests, “Seek first to understand, then to be understood.” In explaining this habit, Covey suggests that most of us listen to what someone else is saying while consciously or subconsciously formulating our reply, a reply that is likely to be based on giving advice, explaining, judging, agreeing or disagreeing according to our own frame of reference or agenda; rarely do we actually acknowledge what the other person has said. Quite often we may be so busy aligning what is being said with our own experiences and formulating what seems to be an appropriate reply that we really do not hear anything beyond the actual words. We do not read the body language or between the unsaid lines; we do not pick up the hints; we do not listen empathically; we are unaware. Similarly, our automated salutations: “Hi, how are you?” And the response: “Good thanks!” Do we really want to know? Are we really expecting a response that actually tells us anything?

So, when Laura asks the question, “How invisible was my invisible illness really?” we know that no one could see what was happening inside her bowel, or the anxiety swirling around inside her head. The majority of people who saw her in the street, encountered her in a passing moment, would only see a well presented, “normal” person going about her day to day activities. They would not notice the “puffy, pale, prednisone cheeks,” the fragile, skeletal frame, the blackness under the eyes – and let’s be honest, would we really want them to?

Just as I preferred no response to my ‘boot’, so I am sure the majority of people with any “invisible” disease, would prefer it NOT to be noticed. Even for those of us who know Laura well, for those of us who were well aware of the pain and struggle, there was a fine line between acknowledging the illness and ignoring it. A fine line between the “Just do it” attitude and that of “Let it go.” I was never really sure which side of that line I should be on and frequently stood astride it undecided! It felt so much like soldier-on against all odds no matter what the cost, or give in to it – let it win. Of course, there is a middle road but it is so often hard to find. 

What IS required of all of us, whether we are the person suffering from the illness or someone on the outside looking in, whether we are referring to strangers, to colleagues or to our most beloved, is awareness, understanding and acknowledgement.

A friend who recently had some cardiac issues is about to return to work and sent a Facebook message to her friends and colleagues in which, amongst other things, she clearly stated some restrictions on what she would and would not be able to do. She also said: “I may still get chest pain and need to use my spray. I need you to respect that I know my body and know when there is a real problem and when there is not. I need you to allow me to have the pain openly and subsequently use my spray without the fear of your reaction and a trip to ED.” I love my friend’s honesty and openness; I love that her friends and colleagues are obviously aware of her needs and perhaps overly zealous in looking after her; I love that there is AWARENESS here, both self-awareness and awareness in others.

To me the pivotal word in Invisible Illness Awareness Week is just that: AWARENESS. It is not possible for people to really understand that which is beyond their experience and, fortunately, the majority of us have not experienced Crohn’s disease or any of those other ‘invisible’ illnesses.  But we do need to be AWARE of those around us; we do need to LISTEN with empathy, NOTICE and acknowledge each other’s needs, make no judgements, be open and flexible and treat everyone as we would wish to be treated ourselves.

And the responsibility does not rest only with those of us who are free from illness: it rests also with the ill to be open and honest, to say what they need, to raise AWARENESS wherever possible without fear of being judged or discriminated against.

As Laura so rightly says, “. . . it’s evident that it is important not to judge, always show compassion, speak out and make the most of the good days and the bad days.” But then, isn’t this a statement that is true for all of us, all the time?

Perhaps if we all took the time out of our busy-ness, opened ourselves to awareness and treated each other, and ourselves, with dignity and respect . . . perhaps if we acted always with compassion and empathy for others . . . perhaps then our illnesses and our needs would no longer be invisible and the world would be a happier place for everyone.

You can read more of my mum’s thoughts both written and read, inspirations, motivations and life over on her blog Going with the Flow – https://vhay4072.wordpress.com/