Chronic Illness Changes You

I had an entire update typed out that talked about the current situation in regards to tests, bloodwork results, etc. But I wiped it out because a. it was boring even to me, and b. I want to talk about something much more important.

Chronic illness changes you, and it’s okay to mourn who you were or be angry about what you’ve lost.

I’m going through it right now. I’ve always been open and allowed my vulnerable feelings to show, because it’s important to normalize it, but woo have those feeling been intense lately.

One of my biggest struggles is a two pronged one: knowing what I can handle in this new form, and reinforcing to others that I’m not capable of everything that I used to be able to do.

I’m used to being a Get Things Done, reliable and creative person. I’m the one that has run events and arranged things because if I didn’t do it, it wouldn’t happen, and when I took on the task they were a success. That sounds like a brag but seriously, I’m really good at managing things and making things happen. It’s a superpower.

However, doing that kind of job takes energy and stamina, neither of which I’ve had much of since I was diagnosed with Crohn’s. Turns out that when the disease that makes you attack yourself internally reaches a tipping point, that forces all the resources you had to focus on that one thing. Who knew!

Well, actually I did, but knowing and heeding those restrictions are two different things. And here’s the other problem: when you’re known for being that kind of person, people come to expect it from you. Even when they don’t consciously mean to, there’s often pressure to perform in ways that you’re just not capable of anymore. That’s been a situation that I’ve been facing the consequences from: I was pressed to take on obligations that I didn’t want to take, and even though I laid out boundaries, I allowed them to be ignored because I didn’t want to disappoint. And guess what? I disappointed anyway, because I let other peoples’ wants override what I knew to be true about myself at this point.

I just can’t do what I used to be able to do.

I was called out on it, and fair enough, I promised something and haven’t delivered it yet. But I also found myself struggling with deep emotions that go beyond that one small incident. Guilt, because I wanted to be the person that didn’t disappoint, Anger, because I received no benefit from what I have been unable to fulfill; it was an offer that I made in generosity that cost them nothing to wait on and me everything to execute. [energy, money, time, etc] Also anger because it’s a symptom of what I mentioned above, trying to please others when I knew that I was going past the boundaries that I’d set for very good reasons.

And then there is the grief, again, at losing who I was.

I can’t be the person I used to be, at least not now and maybe never. I am changed by this disease and I’m still figuring out all the ways that’s happened and who I will be. I’m mourning a life that I built up by my own two hands, a reputation that I worked hard to establish, a practice that lies in dust because I can’t physically or mentally handle it right now. I don’t even know who I am anymore, and it makes me feel lost and alone and ashamed, even though it’s through no fault of my own that I am where I am.

Chronic illness is a spectrum. Some folks with Crohn’s work regular jobs and are well regulated. They manage to keep living their lives. Me, I have not managed that. I did maintain for a while, but it was a struggle that I couldn’t keep up, and now I barely have the energy or concentration to do the tiniest bit of what I used to do. Most of my energy is used in doing the bare minimum to maintain my life. It’s absolutely possible that things could shift back and I’ll end up with more ability and drive. I am fervently hoping for that outcome. But there will always be the fear underneath that I’m promising too much, I’m depending on a situation that could change at any minute and leave me with the frustration of letting people down again.

So I need to find a way to move forward where I can avoid that situation in the future. I need a path that allows me space to work in the moment, to present what I have at any given time without working on the promise of a tomorrow that isn’t a given. Writing has been one path, but it isn’t a very lucrative one. It fills me with joy and is one of the dream jobs I’ve always had, but it doesn’t exactly pay the bills yet. Fiber art has been my heart job and I don’t want to give it up, but I need to find ways to explore it without draining my energy and yet bring in an income.

I’m not sure how all that will work out. As I said, it’s all a work in progress and success hinges in part on how my body is able to keep up with my plans.

All I know is that I don’t want to disappoint anyone again, especially myself. It’s imperative that I figure out who I am in this life post-diagnosis. If this is also you, I encourage you to keep exploring your options and mourn who you were – but don’t be afraid to embrace the reality that change needs to happen, and that doesn’t have to mean that you’ll lose everything you were. We just need to figure out how to integrate the old and new in a way that we can live with.