Invisible – Suffering in silence with invisible chronic illness and pain
Do you suffer in silence with invisible chronic illness and pain
Do you constantly suffer pain with fibromyalgia? Has lupus taken a hold of your daily life? Has chronic fatigue syndrome challenged you every day to the point of sheer exhaustion? It would seem that one of these chronic illnesses would bring a person to their knees and, for many people who suffer from invisible chronic illness, the grind of simply trying to make it through to the next day can be formidable.
I grew up from the perspective of ‘unless it’s broken or bleeding you’ll be fine’. I must admit that, learning to cope with someone I love with an invisible chronic illness such as lupus, fibromyalgia and other conditions, has been a large task for me. Consequently, I felt invincible through most of my life. Over the years of living with a person with multiple invisible chronic illnesses, I’ve come to learn that just as a bruise or broken arm is real and painful to me, these invisible chronic illnesses are just as real and debilitating to those who suffer from them.
There are still a great number of unfair and ignorant stigmas attached to those who suffer from an invisible chronic condition. Just as painful as it is to suffer daily with these conditions is the suffocating feeling of abandonment. I’m not sure why this happens and I can only chalk it up to people not knowing what to do. I’m sure there are many questions by people as to how the condition manifests itself, but there seems to be a great reluctance of connection to an afflicted person for fear of catching a horrible and life-altering disease. This unfair abandonment is akin to someone slowly dying and being ignored.
Can you imagine living a regular happy life, communing with friends and family as a normal person, when you’re told you have lupus,fibromyalgia or another invisible illness. Not only is there the initial fear, sadness, anger that grip you, there are so many question inside ones mind on how this will affect their life. You then start to notice that friends slowly stop calling and asking how you are, even people you would’ve considered life long friends. Eventually, nobody phones at all and you’re left all alone, most days in a prison of pain and loneliness as you suffer inside yourself, asking why all this has to happen. There is the strong urge in oneself to call out in some way, but it all seems fruitless with so many emotions tugging at you in every direction.
We live in a very myopic and egocentric culture in North America and this attitude has permeated our actions in how we deal with people as a whole. It is about how one can get ahead, come out first and finish the race with no regard to whom or what has been hurt along the way. The next time you run into someone who you know has lupus, fibromyalgia or some other chronic condition, don’t ignore them or pass judgment as to why they’re out that day if they’re claiming to be so sick. Don’t simply walk by and pretend you don’t see them. Don’t offer token words of ‘you’re looking good today so you must be all better’. Don’t make superficial excuses as to why you haven’t taken the time to call. Simply reach out. A simple act of a phone call or an invite for a coffee would go a long way. A simple, authentic attempt of connection can go a long way with people who suffer in silence.
I’ve seen first hand how shallow tokens of acknowledgment can hurt. I’ve witnessed suffering that no single person should have to endure in their lifetime. I’ve watched dreams fade away like a morning mist while having to deal with the very real ramifications of living with invisible chronic illness and pain. I’m thankful, however, that my wife and I can lean on God for strength, encouragement and help to carry us through the bad days – which are most days. For more information on what we and countless others deal with on a daily basis, visit CureMyWife.com ( www.curemywife.com )
I’ve written a song (recording available soon) called ‘Invisible’. It’s a recognition of those who’ve had to live with the fallout of invisible chronic illness and pain. There is nothing lonelier for the afflicted.
Words and Music: Jim Bugg
Copyright 2011 JBM Productions
Am I invisible
Can’t you see me?
I’m standing right here in front of you
Hoping that you’ll see me
Am I no more than a memory
A fleeting thought of inconvenience
I’m standing here, to console your fears
I’m praying that you’ll be set free
I’m not just a faded photograph with torn edges to throw away
Not a simple line in a love song that is forgotten like yesterday
I’m not some mystery soul that feels nothing in times like this
Not some shapeless face in the shadows where ignorance is bliss
I’m not a single wave on the ocean bed that dissolves and washes away
Not a lonely leaf that blows on a cold autumn day
I’m here crying to be recognized for who I am, not some fantasy
To be forgotten in a brief moment and discarded so randomly
Blessings my friends,