First the fear comes when the symptoms start and they don’t go away. Next they get worse. Which makes everything worse. The fear intensifies when you continue to get sick and all the doctors tell you you’re going crazy.
There is a constant fear of not knowing your body’s next move. Not knowing if you will wake up the next morning, and not knowing if you’ll drop dead at any second. You may think I’m exaggerating but I’m really not. All last year I spent the majority of time terrified of the next moment, the next second, the next symptom or episode. I spent the time believing I was going to die.
That is what it is like to live with fear.
So, say you get through that.
You don’t die. You figure out what’s wrong with you. You start seeing the right doctors, the specialist’s down in Toronto that if you lived in America would cost a small fortune. The Canadian Health Care System is far from perfect–too many of us have to wait too long, too many of us go undiagnosed, or misdiagnosed for years. But given all it does for the majority of people (those people not being the type with rare and confusing diseases-only half the medical community has ever heard of) it is good–much better than the American system.
So you start to get better-you can walk again, you aren’t passing out once-twice-three times a day. The pain is still ever-present, always there, a shadow that follows you-the depression is if not harder, than as hard, as the illness itself–though in some ways they are one in the same, but still you start to get better. You start to look at starting school again. You start looking towards the future. You start convincing yourself it’s safe to live again…trying to at least, and then comes the day, where the symptoms are getting worse. The disease is running rampant. The pain is all consuming, and not controlled, and even though it wasn’t controlled beforehand, it’s getting harder and harder to deal with.
That’s the day you have to face the reality that you’re getting bad again and the fear that had abated to a slight hum in the background of your mind, comes back, full force like a depressive episode that creeps up on you so slowly you don’t see it till it’s already there–haunting you.
Fear is something we have to live with when we have a chronic illness. I wish I could say it goes away but I don’t know if it does yet. I don’t think it ever fully goes away because I remember these feelings all throughout my teenage years–starting at thirteen when I believed I wouldn’t make it to see high school graduation, never mind graduate college.
I think the trick is to learn to master your fear. And to live each and every day in a way that ensures if you died tomorrow, you wouldn’t regret anything you did. That is a bold way to live. Harder than anything else when you are chronically ill, disabled, depressed, and scared of your disease getting worse. I have yet to master the art of living. And lately things have been much too hard for me. Slowly, my world has been closing in on itself, shrinking and becoming smaller, the trick is to fight against that. To not only hold onto hope as tightly you would a flashlight in the dark, but to remember to find the bright spots, even on the darkest days.
And the key to living with an invisible disability is to focus on what you can do. Focus on what you can do right now to make your life better–try not to let the fear of it all get to you, push back against it, master your fear so that it doesn’t master you.
That’s it for now everyone, just try to live life as best you can-that is all you can do and always remember: hold onto Kindness+Compassion+Love