Saturday, March 4, 2017

On What I'm Begging From You... On Invisible Illness

***In my life I have watched as several of the people I care about must have suffered and even died from an illness that no one could see. This one is for those whom suffer from invisible illness. For mom. For Krystal.***

Let me tell you a story; one that is close to my heart, but admittedly from my own perspective, not the sufferer's. I'll do my best to convey the sentiments although I may have it all wrong. 

Imagine for a moment.... you're excited for a weekend working at an awesome outdoor concert festival. You'll be surrounded be fun-loving people, music and your passion. You'll laugh and be the life of the party and make everyone feel like a million bucks. You'll take some awesome selfies, probably post some SnapChats of the fun from your perspective. After all, that's who you are. 
Then mid way through the first afternoon you notice that you're losing feeling in your lower half. Weird. Onward. Selfies. Snapchat. Belly laughs. By the evening you can barely walk as you can no longer feel the steps you're taking. You use the washroom only to hear yourself urinate but feel nothing. Concern. Confusion. Snapchat. Insta. Sing a song. Maybe it's time I head to the hospital!

4 weeks later you're still in the hospital. They've tested and prodded and made conjectures. People has visited and speculated. Flowers are sent. Worried loved ones are frantic to help you. The worried phone calls and text are frequent. Snapchat. Selfie. Laugh and play all while laying in a hospital bed unable to feel your legs. Finally, a doctor gives you the diagnosis.  Multiple Sclerosis. Your brain has lesions on it that on the bad days will cause you immobilizing pain, on other days will cause to feel nothing in your extremities, on other days you'll have some grace and feel mildly better. The myelin that covers your brain will continue to degenerate. They will try to mitigate your symptoms with daily injections that invade your skin to the tune of 8cm into your flesh. Snapchat. Send a joke, laugh, make new friends in the hospital bed. 

It's now been 7 months since the diagnosis. The months have spent searching. You have searched for the right medications; searched for the answers to how this illness is affecting your brain; searched for connections and relationships. Searched for the "you" that was there days before your 30th birthday. Some days you find the answers and you celebrate! Most days your search yields more pain, confusion, loneliness, more fear, more needles -- more reality.





"You look so good. I had no idea...". 
"But you seem to be so happy. Are you sure you're sick" 
"You're so positive and strong" 

Each time she is told that she "looks good" or "looks like you're ok’ by people who have little concept of even the lengths she has gone to just to connect with them at all, it carries with it an additional pain of appearing ‘well’ or ‘normal’ despite how awful she actually feels.

Our culture does its best to ignore the existence of illness, especially when that illness is chronic, invisible, complex and as a consequence doesn’t fit inside the mainstream idea of what ill-health means or apparently ‘looks like’. Instead the focus is on the beautiful, the youthful and the healthy, as if in denial of pain, illness, and suffering. Mainstream media also seldom caters for those with ill-health, disability, limited mobility or pain but exclusively the ‘well’ population. She is expected to wear her illness on the outside all the time. Ironically, despite your discomfort with her pain and your wish for her to be "normal" again, you expect her to let this disease take her good days. You see her on those good days and wonder if she's really sick at all. After all, she looks so good. She doesn't let the pain and anguish of the past 7 months swallow her.  She refuses to let the uncertain future fill her with despair and darkness. 

When you live with a condition that defies others’ ideas of chronic illness or cannot be placed neatly in a box, sadly it’s often the sufferer who is expected to explain and even defend the very symptoms that thwart their very existence. Living with constant pain, needles to ease that pain, fatigue and even the mental health issues associated with chronic pain and life-altering illness, means that her life is already full to the brim with challenges. Yet her inability to ‘be well’ coupled with looking healthy presents further challenges, from being disbelieved and poorly treated, to being judged or repeatedly advised on how to ‘heal’ herself.

The biggest grievance I have is that those around her, even the ones that care the most, often do not believe what she is going through is real because to others she “looks good.” She laughs. On her good days, she tries her hardest to make sure that this disease doesn't rob her of her sense of self and her charismatic personality. On her bad days, she suffers in silence barely able to get out of bed while the depression and anxiety of her sudden universe-shattering diagnosis threaten to consume her. Sadly, this makes her feel as if she are being called a liar. 

Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to. 

I beg of you...celebrate her good moments with her.