Published on Tuesday, 11 September 2012 19:02
Written by Jules
It's that time again! It's Invisible Illness Week. It's that time each year that those of us who have or those of us who know and love someone with an invisible illness take a week (yes a whole week) to share support and awareness for those illnesses that are not visible to the casual observer.
Invisible illnesses can be anything from a mental illness, to deafness, to diabetes.They are chronic pain diseases, autoimmune disorders, and hundreds of other illnesses you may never have ever heard of. They are those things that live in us, and hurt us, but do not give us the visible advantage that other illnesses may give.
What? Did I actually say ADVANTAGE? Yep, I most surely did. Now why on Earth would having a visible illness be an advantage to having an invisible illness? Let me try to explain.
Often I walk with a cane. When I do, I no longer have an invisible illness. My illness becomes quite visible, the cane is my tell. When I walk with my cane people are so kind to me. Doors are opened, bags are carried, and no one is angry with me if I walk a little slower in the aisle at the grocery store. Now, there are days when my hip is feeling a bit better, or I am being walked by my dogs and can't handle them and the cane, and guess what? My illness becomes very invisible.
When I walk a little slower, sans cane, the sighs behind me are audible. When I ask for help at the grocery store with my bags, I am given the "entitled" look. My life becomes very different. Oh, yes and lord forbid I use the handicapped button to have a door at the shopping mall be opened for me because it's too heavy for me to push. If looks could kill.
Do you think I am exaggerating? Read on.
Because of individuals like this, we continue, year after year to have Invisible Illness Week. Because of "people" like this, I am actually afraid to get a handicapped placard for my car. And let me tell you that some days I wouldn't need it, but some days it would be a blessing.
What would be the very best "Invisible Illness Week" I could ever imagine? For it to go away, for us to not need it.
I would love to wake up one day to a world where people on this earth would treat me the same way for having a chemical imbalance in my brain, or a positive ANA (look it up), or hypermobile joints, and the inability to create colagen, or some weird sticky blood, and say, "Hey, I may not be able to see it, but wow that's just as unfortunate, and should be treated the same as the person in that wheelchair, that person is ill and instead of being scorned, should be treated with compassion and respect."
Let's face it, especially in the case of mental illness, we are treated like untouchables once the invisible is revealed. I suppose that is a topic for October's Mental Health Awareness Week, yet, I can't help but imagine a world where my life is no different from anyone elses from the standpoint of the rights I receive and the respect I should be afforded.
Why should I be afraid of being sick just because of jackasses and defective souls like Rod Liddle and types like him who wish only to scorn and reject anyone who is not like him, and seek to find ways to remove from people like me, the rights that we have fought so hard for?
I am sitting here at Starbucks, I am having a great, anxiety free, relatively pain free day. I don't have my cane and I am not using any special services. I am just being little old me, looking like everyone else. If I took off my sweater and only wore my short-sleeved shirt, there would be a hardly visible fentynal patch. Some might think I was just trying to quit smoking, others might know it for what it is.
When I ordered my coffee it was a fat free, two splenda latte. I can't have fat (much) or sugar (really) or I will get horribly ill. You know that scene in Bridesmaids when they go to try on the dresses? Ya that. So, really all this stuff does follow me, and I do appreciate a restroom with a bit of a taller toilet and rails that help me sit, and get up.
Is it fashionable? I hardly think so. I do know one person who seems to think so, other than her, I do what I can to not be sick, and it's hard. As I said yesterday, it's easier to stay home then to be in public and experience symptoms. It's not fashionable to pull out meds with lunch or dinner when you are out with friends. Comparing where you got your cane with others on twitter is not nearly as fun as discussing which celeb is sleeping with the other.
One day we won't have an "Invisible Illness Week". One day the deaf, the Fibro patient, the Diabetic and the EDS sufferer won't have to worry about that singular defining moment when they reveal their tell. They won't have to work toward extra support from family, friends, foundations simply because at first (or fifth) blush they don't seem ill. And, when someone does find out they are ill, or disabled, they are not questioned, or teased, or told they are "crazy" and "incapable" of working jobs or functioning in certain parts of our society.
Maybe when I need you to hold the door for me it's because I have an illness you can't see, or maybe it's because I expect that polite people still exist in this world. Maybe when I am a little sadder today than I was yesterday, you could give me a hug instead of assume that I can't function or I am a nut job.
Or maybe, just maybe you could start with something even easier, you could believe me when I tell you that I am sick. Just because you can't see it, don't make any kind of assumption at all. Until the first time I lie to you about something, don't assume I am lying to you now. Why would I lie about being in misery? Trust me, this is not the way I want attention. I would much rather get your attention by doing something much more awesome than being Chronically Awesome.