I want to begin by stating that I will try to be as honest as possible as I write this blog. I am starting it with the hopes that it will not only help me connect with other people in my situation, but will also help the family and friends of people with lupus understand what their loved ones are going through. That being said, I’m sorry to say that I will do my best to keep my identity under wraps. The sad truth is that lupus isn’t a disease I want all my classmates and future co-workers, bosses, etc to know I have. I know this makes it sound like I am ashamed of my diagnosis, but that isn’t the case at all. Rather, I worry about the judgment they might make of my capabilities. Unfortunately, they may be right at times. Lupus isn’t a disease that allows for consistent work ethic, let alone late hours and early mornings. It doesn’t mean that I won’t be a diligent worker, but I don’t want them making assumptions about my capabilities before they even meet me. More over, I would like to retain my right to privacy about the state of my health.
I was first diagnosed at 16, when I was a university student. It was a long process to diagnosis. I was passed around from doctor to doctor. Through many tests, possible diagnoses, and prescriptions – some of which badly reacted with each other. I was in and out of the hospital throughout it and the trial is pretty clearly depicted on my grade transcripts. Professors weren’t very understanding and it never occurred to me to take some time off. I haven’t had a flare up in over 5 years, and was generally considered in remission by my doctor. This meant no meds, rare check ins, and generally I was almost able to forget I had lupus at all were it not for the residual joint pain and swelling I still experienced.
I am now a graduate student, who is finding that it is quite a struggle to fight a lupus flare up and stay in school. I can’t afford to take time off, but staying in school (i.e. not failing out) is not an easy task on its own let alone with an active flare. I’m lucky that its not hitting my kidneys, but that doesn’t make it any harder to live with. To be honest, sometimes I think my friends actually have a harder time understanding it precisely because of that though. I just don’t seem ill to them. When the doctor told me that I was, indeed, having a flare, he told me that I would have to relearn my limits. He said that while I might think that I remember how bad it can get, I probably don’t. He was right.