Lupus Is A Learning Curve

Like life in general, lupus is a learning curve. You’re not equipped with everything you need to know the day you’re born. And I wasn’t equipped with everything I needed to know about chronic illness the day that I was diagnosed with lupus and rheumatoid arthritis.

It’s a process, a never-ending evolution. It takes time. It takes patience. And it’s a cold dose of reality that is hard to swallow. But getting sick made me take time to figure out some key things about myself. It made me ask the tough questions, even if I wasn’t fully prepared for the answers.

Exhibit A: Part of a post from late November/early December that I never finished writing, and, consequently, never posted:

I want 2010 to be a new beginning. I want to stop falling for guys who clearly aren’t good enough for me, because I feel like I can’t be picky because I’m sick. And who really wants a sick girl? That’s really lame, I know. But it’s a thought I can’t quite shake. I need to make peace with my last relationships. And I also need to make peace with illness. I need to believe that even though they didn’t work out, they were worth something. In some ways, I am where I am today in spite of them. And I am where I am today in spite of illness.

Because I was beat down by those relationships, mainly in a figurative sense. I was treated badly. And I allowed that to happen, because I didn’t think I was worth enough to stop it. And I have been beat down by illness. But I’m still standing. And that counts for a lot more than I allow it to.

I really want to make a change. I want to be a better person. I want to make a difference in the world. I want to find someone who loves me for who I am, and for all that I’m not. Someone who looks at me and sees me as whole.

In some ways, I sort of feel like I need to get over myself. Like wallowing in self-pity is better than facing up to reality, and that needs to stop. Because in reality, I could be dying, and I’m not. I know that things aren’t as bad as they seem. But it’s not just illness. There always seems to be some major drama happening in my life. And I HATE it. I despise drama. I don’t know why it likes me so much.

Shockingly, much of this has come to fruition. I have met an amazing man who really sees me for who I am, and is there for me unquestioningly during good times and bad. Cultivating this relationship has taken time and patience, but has definitely been worth the effort, because I never quite knew I could feel the way I do about another person.

And while things have definitely seemed better illness-wise, the learning curve is still there. And not just for me, but also for those around me. I think the biggest thing I want to convey is that I’m not the same person I was before. That’s not necessarily a bad thing. But it’s a fact. It is what it is. And where I end up at odds with people is when they treat my life like it’s the same as it was pre-illness. But how do you really convey this to people? Clearly, it’s something I still haven’t mastered.

When I woke up feeling a bit like I had the flu a few days ago, I realized I was experiencing my first flare in four plus months. And I finally realized about flares what makes them so nasty. It’s not just the pain, fatigue, and the feeling of un-wellness. It’s the fact that sounds are too loud, lights are too bright, and the hustle and bustle and stimulation of everyday life is just too much. What I would normally welcome, I just want to keep out.

It has taken me two plus years to realize when I’m flaring. It has also taken me the same amount of time to realize that I have to know my limits, and I need to stop before I push myself over the edge. Asking for help has been another thing that has taken getting used to. And those around me should know that I don’t always ask for help when I need it.

But the truth is, the more you live, the more you learn (hopefully!). And it’s the same with illness. I think it’s too easy to say that the longer you live with illness, the easier it gets. I don’t think that’s necessarily true. But I do see that the line between my life and lupus and rheumatoid arthritis has gotten much vaguer. It hasn’t been a seamless transition. But there is less distinction now between illness and my life, my life and illness. They are one and the same. And that suggests to me that somewhere along the way, I decided to “woman-up” and accept the hand I was dealt, rather than deny it or try to will it away.

And I keep trying to remind myself that nobody’s perfect. We all have flaws. Some are more visible than others. Some are more persistent than others. But we all have them. And we’d all be better off if we started celebrating our flaws rather than berating ourselves for them.

And maybe, just maybe, rather than squelching my life, lupus and rheumatoid arthritis have, somewhere along the way, taught me how to live.