Courage, They Cried: Life with Chronic Illness

It takes a lot of guts to have a chronic illness.

This thought came into my mind as I was preparing for a drug challenge appointment that had the very real possibility of me going into anaphylactic shock.*

It’s a fun thing to do on a Wednesday.

Granted, this one is a somewhat extreme example of what you put yourself through when you are living with a chronic condition. So let’s take a look at some of the other things that are part of our everyday lives.

Surgeries and yes, it’s on purpose that I made that a plural, as so many of us have been there more than once. Some even dozens of times. You may not have thought of yourself as brave until the day you show up at the hospital, willingly letting someone cut you open. But you gather up all the strength you have and do it anyway.

And what about this one: injecting yourself with medication that you know will incur side effects, sometimes making you curl up on the bathroom floor, puking and with terrible headaches. And you do it anyway, because you know that in between shot + side effects and the next shot + side effects, you can actually live your life. No matter what you know intellectually, that moment of doing the injection takes courage.

And then there’s getting up in the morning. When you have a condition that causes chronic pain, waking up is one thing. Starting to move another. Putting your feet on the floor and standing up when you know the pain that’s about to happen is very definitely brave.

I have railed against being called brave because of my disability and more than once. This is usually said by someone who has no idea who I am or what I face every day, but think just the fact that I exist with a disability is brave. And that is an inane and witless point of view, mired in stereotypes.

Bravery, I’ve said, is doing something scary when you have the choice to not. Such as a firefighter running into a burning building, or someone leaping into traffic to save a kitten. It is about putting yourself in harm’s way for a greater good. To act, to follow through, even though you are afraid.

Which brings me back to the courage required to have a chronic illness.

We put ourselves in harm’s way for a greater good every day. It can be as simple as getting out of bed to send your kids off to school, even though you, like the little mermaid, feel as if every step is like walking on knives.

I remember those times. Well, not the children, but the agony of walking with rheumatoid arthritis.

Every few weeks, I get injected with a medication that gives me side effects for a few days — luckily not devastating — and which have the potential for a number of serious and potentially fatal consequences. Because it enables me to have a life and that makes those consequences worth it. At least in theory.

So much of this become second nature, just part of life. You can get used to pretty much anything, including always feeling like you have a sinus infection, every movement hurting, a constant low-level of queasiness, and running an internal monitoring ALL THE TIME of when you should take your next medication. Having a needle inserted in your joint to drain it can become normal, as can multiple other injections, painful and intrusive tests and the list goes on.

You get my point. Whether merely an annoyance or requiring an engineered — constantly engineered — fearlessness, living with chronic illness is not for the faint of heart.

But what if you are faint of heart when you get the diagnosis? you may ask. And to that I say that you will very quickly become as brave as a lion, as courageous as a firefighter who runs into burning buildings and so resilient that nothing can break you.

You will be able to gather up the strength of giants and do things that deliberately put yourself in harm’s way for the greater good. For yourself, for the people you love, for the future. And most of the time, you won’t even think that what you’re doing is brave.

But you are.

*In the interest of transparency, the drug challenge was rescheduled due to me crashing and needing a lot of sleep.

Son't forget to enter the second Chronic Christmas Giveaway for a set of Integrale adaptive cutlery!