Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)

When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancée and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.