There are days, like the ones I have had lately, where the word “chronic” literally rings through my head every few minutes. Constantly popping its head back up like a curse. It is the word that engulfs my entire existence, and even during times when symptoms are a bit reduced, the truth of the word follows every action I manage to achieve.
Being in my mid-thirties, now, I have lived through seeing many people I know or are connected to, get ill from various illnesses; some much rarer or confusing than others, and many of them very painful or complicated. After finding treatment, going through the healing process, they continue on, somewhat changed and more grateful for their health, to live the rest of their lives. I honestly can’t imagine what that might be like. Of course I have had many temporary things wrong with me through the years, whether they were illness or injury, just like you probably have, but all those things, from the least to the most painful, are so very different than what it is like to have a chronic illness and chronic pain.
I think it is pretty human to get used to things as they are once they are the same for long enough. I imagine this is why people say things like “time heals all wounds”, or “it gets easier every day”, when something terrible happens. Obviously the idea is that the bad thing has happened, life is continuing on, and the longer you spend living back in that reality, the more the terrible thing starts to fade from your foremost thoughts and emotions.
I say that to try to impress on you the true heartbreak a life of chronic pain and illness carry along with it. As symptoms flare and subside, which can happen for days, weeks, months, or even a year, we get used to the new reality. If we are “lucky” enough to have something that has hurt for five years finally start to subside for a small amount of time, our human nature, the part that lets all wounds heal with time, cannot help but get used to that small new freedom. It isn’t without complete skepticism, of course. I am well aware that any one of my symptoms subsiding momentarily just means they will be back at some later point. When that later point finally shows up, though, the heartbreak is hard to explain. “Chronic” also means a life of chronic disappointment. Something you could do last week isn’t necessarily going to be something you can do an hour from now. When enough hours have passed, though, where you could do it, the moment it is snatched away again leaves a hole much bigger than the last time it happened. The holes get so big over time that the abyss it creates swallows you, sometimes completely.
As you grow older with a chronic illness, you have to accept new losses completely outside of yourself. When everyone I knew had just graduated high school and were planning to go to college, I was calling the admissions office of the school of my dreams to keep persuading them to push off my start date because at the time I had a home nurse and was on IV medicine. I did this over and over again, so thoroughly determined to achieve this dream of mine. Except that dream, and many more, would never really be achieved. After so many delays I was finally told I would have to reapply for admission, understandably. I never did. I would never be in a position after that point where moving out of state, on my own, and doing every little thing from morning to night that every normal person does, would be achievable to me alone.
So you watch as everyone moves on to new aspects of their adulthood. Exploring the things they love and discovering what might one day end up being their careers. It happens around you much the same way you see those clips in movies where everyone in a city is moving sped up but the camera is focused on the one still person in the crowd. You watch the entire world move and grow around you, and you do not grow with it. You do not move on, you do not enter these different phases of life most adults you know do, because you simply cannot.