The Hole in the Chain Link Fence of Awareness Campaigns

I have always felt that there is a bit of a hole in the chain link fence of awareness campaigns. See, awareness campaigns pose patients as warriors and survivors, and this has the very well meaning intention of offering hope and encouragement to those living through disease and disorders.

Unfortunately, to the individual living every day with a disease or a disorder, not every day is all smiles and psyched up with hope and confidence. Some days we are battered by pain and illness, and then have to face the added challenge of societal dysfunction. On those days we don’t have our swords, spears and vibranium shields lined up. Some days, we crawl into dark closets and sob until we pass out. Some days, we are too weak to even get up out of bed in the morning to face the day.

There’s nothing wrong with having bad days, with having days when you doubt your very essence. Unfortunately for persons living with autoimmune and chronic illness, we often have more bad days than good.

Our overcoming the challenges we face, the essence of our spirit of survival and courage in battle is in the fact that we hold on one more day, breath in and out, even incredibly smile during the worst of times. We are warriors and survivors because in this moment, we are.

Truth be told though, I wince inwardly every time someone says to me, “But you are a fighter, you’ll make it!”

Of course, I know I will, but right now I am in so much damned pain that I am trying to live through. I try to consider what I would say if I stood at someone’s bedside and they were in pain. I think I would acknowledge their pain, and if I couldn’t figure out what else to say, I’d be quiet rather than gloss over their pain at that moment.

I’ve discovered something that encourages me without putting too much pressure on me. My friends simply come and hang around doing normal things, like cooking or, this one was special, playing music, with actual guitars and all. And when its days that I can’t sit up and “warrior,” they don’t make a big deal of it. And when I can, I go out of my way to be there for them, or to be there for someone who needs it even if they are not my friends.

If you love someone with chronic illness, don’t doubt their strength and courage just because they are having a bad day. And please don’t gloss over their every day challenges and pain.

Getty Image by Andrei Kravtsov