I was telling someone just the other day that having Rheumatoid Arthritis has taught me more about compassion than anything else ever has. Before facing my own chronic illness, I didn't really understand what it was like to endure this kind of thing. "So, what is it really like living with a chronic illness?" was the follow-up question, and I wasn't at all sure how to explain it. In the time since, I've pondered it, and this is the closest I can come.15
There are days...
There are days when I'm exhausted in every imaginable way. The pain, be it mental, physical, etc., of a chronic illness is only multiplied by the unrelenting constancy of it.
There are days when the illness is still there--it's ALWAYS there--but it seems less overwhelming somehow, days when I'm dealing with things pretty well and I feel like I'm gonna beat this thing eventually.
There are days when I dread sleep because the pain doesn't leave me even then--I dream every night of being in pain, and I wake up every bit as exhausted as I was before.
There are days when the prospect of facing another day of pain--there aren't ever any that are free of it--is almost too daunting, and I have to work to get myself out of bed.
There are days when I think about spending the next forty or fifty years this way and I'm not sure I can do it. I'm in that difficult place with chronic illness where the right treatment hasn't been found. I know it will get better. I know that. I find comfort in that. But when someone is in the middle of suffering, especially suffering that is so unrelenting, the reality of "now" and the pain of the moment is sometimes all a person, weary from constant battle, can truly process. And there are people who don't have that promise, who are facing the rest of their lives without relief.
There are days that are good. My spirits are up. My strength is up. And I'm feeling good about life.
There are days when I'm faking it, when the smile is forced and the cheerfulness is an act. Sometimes, it's because I just don't want to talk about it or defend myself to people who insist that a frown, a single word of complaint, any physical concession to pain, etc., means I'm a failure or not being strong enough or not dealing with my illness properly. Sometimes, it's because I'm trying really hard to have a better day.
There are days when people are harder to endure than the pain. People toss me dirty looks because they're stuck behind me on the grocery store aisle and my labored movements are slowing them down. People mutter under their breaths when my hands give out and I drop something in the check out lane and everyone behind me has to move to another one while the mess is cleaned up. People take the time and effort to send insulting and belittling emails because, somehow or another, they believe it would be a helpful or appropriate thing to do. People tell me that I have a chronic illness because I must be a terrible person who somehow deserves it, or that if I really wanted the illness to go away, it would--as if having an illness is irrefutable proof of some kind of personal failing. There are days when people cause far more pain than any illness ever could.
There are days when people are my saving grace. People smile empathetically as I struggle to run errands. People assure me "it's okay" when I drop things or can't carry things, and do what they can to help. People take the time and effort to offer words of encouragement, however small. People support me through this illness without judgement or dismissal or hateful words. There are days when I am absolutely in awe of the kindness that people are capable of.
I think it's hard to understand what a chronic illness is like without actually having one. And when I'm asked what a person can do to help another who is struggling with chronic illness, the only thing I can really say is, "Be compassionate and err on the side of kindness, because there are days..."