It's funny to me on occasion when we're not always necessarily aware of what we should be aware of. For example, I nearly forgot that it was Crohn's and Colitis Awareness week. So I wasn't aware that I was supposed to be aware and wanted you to be aware of that and aware of it with me. Or something like that.
But this is something that's just been a part of my life now for more than half of my life that I can't NOT be aware of it. I was diagnosed with Crohn's when I was twelve years old, more than half my life now. There was a short period of time in high school when I wasn't on medication, but otherwise I have always been on some kind of medication, have to plan around the bathroom, or am otherwise always thinking in the back of my mind that need to budget my energy. Sometimes that medication means that I get to give myself an injection, that I have to make sure on vacation that I have kept the syringes cold, like a diabetic. Currently, I'm back to planning a trip to the hospital to get an IV infusion of my medication every eight weeks, which I'm very grateful that my job has been very flexible in working around. I'm still at a point where if I don't eat when I'm hungry, I get very sick. And I don't always travel well. And when my body tells me to stop, I really do need to listen. And there are many, many other things that I have to consider and keep in the back of my head whenever I go out to eat or plan my day or just try to live my daily life.
It is always there, in the back of nearly every decision. Even in buying something as innocuous as a sweater--"Can I have this nice, new thing, or should I save money for when [not if, mind you] my body is going to break again?"
I don't mean to pull sympathy, but I do seek understanding. If you're someone that does not live with a chronic illness, this is a world that you don't completely understand. There are elements that are identifiable, certainly, but a real understanding, constantly thinking about it, and dealing with the physical elements, too, that's a reality that I hope that people don't experience.
That being said, you wouldn't look at me and know that this is my reality. I don't think I look sick. In fact, I look remarkably well-fed, even though my body doesn't absorb nutrients very well, which I find amusing and depressing at the same time. I also don't feel as though anyone can tell from my disposition.
But I have an invitation with Crohn's and Colitis Awareness Week. I am very open about my experience with Crohn's, but I still wait for that invitation. I need someone to ask me how I am and be interested in the answer. I need people to check in on me. I need people to give me that leeway when I need it and take me at my word when I say that I cannot stay a little while longer. I don't want people to look at me and see my disease, but I want people to know that I'm working through something.
And I am certainly not the only one. Crohn's is one of many, many invisible ailments. A cancer patient or someone with a broken limb, those are more obvious. Mental illness can have absolutely no external markers, but rest assured that individual has not forgotten it's there.
This week, there's some extra focus on awareness for those with Crohn's and Colitis and those that love people with Crohn's and Colitis. Take the opportunity to educate people wherever you can. Remember to push for legislation that can help those suffering from chronic illness of all kind (caps on pharmaceutical pricing, for example). But what I would really want to push for and see carried past this week: grant people some extra grace. Just because you cannot see that someone is struggling does not mean that they're not fighting some kind of an invisible battle. Consider that when the fast food worker is slow with your burger or someone cuts you off in traffic. I'm not saying assume that everyone has an excuse, but that people have reasons for why they are they way they are and why they do what they do. Reasons are not excuses, but that understanding can give you the right kind of perspective to address the situation in a way that won't make things worse.
Be gracious to one another. And hug a Crohnie this week.