Let me preface this by saying that I have good days. Many people with chronic illness(es) have good days, but what we consider good days are not a healthy person’s good or even average healthy day. It can be a bit puzzling if you don’t struggle with a chronic illness so let me explain a bit to help you visualize things better.
You know when you have a really bad cold and you are in the midst of it, maybe that fourth day in, where you are just starting to turn that corner but still feel like you’ve been standing at the helm of a ship during a thunderstorm, being beaten by the rain and wind for hours and haven’t slept well because of congestion and coughing and you ache all over? Those are our good days. It varies from person to person, of course, depending on what chronic illness(es) the person might be dealing with but the bottom line is that there are no comparisons between our good days. In fact, many healthy people would probably call in sick- until, of course, they realized they weren’t getting better. This is why we take full advantage of those days where the symptoms and the pain are low and we can participate more completely in our lives. Because life doesn’t stop and we all have things that are important to us which demands our attention.
Chronic illness entangles your life until you can’t recall what life is like without it. Continuing with me as an example, my life has become about doctor’s visits, pills, injections, infusions and various procedures, all in a valiant effort to manage symptoms of conditions that will continue to deteriorate as I get older or, as the conditions progress at their own happy little speed. I live in the ‘in-between.’ In between pain, and constantly trying to dodge symptoms as I endeavour to enjoy life. I don’t remember how I functioned before this, being tethered by a litany of symptoms that dictates what and how much I can do on any given day, and even on those good days, making certain I don’t overdo it. I’ve learned the hard way just how much I have to pay for doing too much.
Living with chronic illness changes every aspect of your life. You lose a version of yourself and that can be very difficult to accept. How we function in our lives, how we make a living and how independent we are- these are all enormous facets of our identity. It’s not a change that happens suddenly, but rather, gradually. It chips away at different facets of our life until we suddenly realize how much we have had to change to accommodate our illness and our new lifestyle. In my case, it was gradually decreasing hours at work, changing my job and hours hoping that this might ease my life a bit, not returning to work, to ultimately filing for disability. My illness has necessitated a walking stick to get around easier. It’s also forced the purchase of a wheelchair, for when I am feeling particularly badly. When you look in the mirror, the person being reflected back at you isn’t what you remembered and yet you are still the same in all the ways that matter.
It may seem to someone outside of this realm of chronic illness that I over exaggerate. It can’t really be that bad, can it? But my purpose in sharing this with you is not to garner sympathy. As difficult as things may be I am grateful to be here. My intent is to educate and to help you empathize with people like us, even though you may not ever understand what we go through every day. It’s easy to go about life thinking that this could never happen to me. I’ll never get sick like that because I take good care of myself. The fact is, none of us ever thought it would happen to us and yet, here we are. Life is a roll of the genetic dice. You get what you get and you make the best of it. I may have forgotten what it’s like without chronic illness, but I make certain to enjoy life now, always making the best effort to live in the moment, because I know how quickly it could all change.
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