While most of what I try and write about here has to do with chronic illness and higher education, the reality is that I won’t always be a student, which inevitably means looking toward the future and exactly what that means; given that I’ve been in school for the majority of my life (read 23 years – that’s a long time!)
I do hope to work in higher education, but something that I am realizing is that students will not always be students, so it’s important to provide them with tools that they can use, not only in the realm of higher education, but in the “real word”, as well.
My illnesses will always be an issue, no matter where I am or what I am doing. I am trying to carve out a niche for myself so that I will hopefully find myself in a work environment that is somewhat more accepting than other places. But this might be a pipe dream.
And there’s also the realization that there are other things I want to do in my life that I don’t want to be a pipe dream.
For instance, I want to have a baby. At least one. And I’ve started the conversation with my rheumatologist about what this might look like. And unsurprisingly, it is complicated but doable.
But when I first got sick, at the age of 22, babies weren’t even on my radar.
Now, though, not only do I want children, I want to make this world more accepting of people with chronic illnesses and disabilities, not just for myself, but in case I have children who end up having chronic illnesses, for them, as well.
Life is a balancing act. A system of checks and balances. It’s hard to balance life with illness and life without illness.
Just as my illnesses have evolved over the years, trying different medications, my illnesses have evolved as I’ve aged, and that evolution has been both physical and emotional.
I think now I am better able to deal with the reality that these illnesses are chronic, that they aren’t going away any time soon. I can’t say I cope better with major flares, because they still totally blindside me.
I don’t know if I fully comprehend all of the issues that lupus and RA can cause, but I do know that they will certainly complicate pregnancy. Because clearly, that’s the topic on my mind right now. And this is a new thing, because I’ve been in a relationship for almost two years, and I’m pretty sure this is it.
But like I said, this wasn’t always the concern on the top of my list. In the beginning, it was all about getting better, of being well enough to function at a level that minimally resembled what my life was like before I got sick. This was easier said than done.
But today I can say that I am leaps and bounds from where I began on this illness journey, and I am living life to the fullest and the best that I can.