Re-Evaluating for Life With Lupus
Being diagnosed with lupus, especially as a young person, can be completely devastating. Not only does it mean that you’ll be on medication for a lifetime (well, for most of us), it also means the daily symptoms you’re experiencing aren’t going away.
Depending on the person, this can range from debilitating lupus fatigue to painful arthritis, with some days being better than others.
One of the big issues of life with lupus is its unpredictable nature, meaning one day you could be back to your old self, and the next curled up in bed all day with a fever, tea with lemon and a backlog of Dr. Phil episodes. Because of this, many young people diagnosed with lupus have to rearrange their entire lives; sometimes even changing the vocation they had dreamed of since they were children.
Although some people are able to carry on working as normal, others find that this is no longer an option. And I was one of them.
By the time I was diagnosed with lupus, six years after first experiencing symptoms, the fatigue, fevers and flu-like symptoms I was experiencing were so debilitating that I had already accepted that my life was going to be severely altered because of it.
As a child and teenager, I loved the theatre. Perhaps I wasn’t the most talented actress or singer in the world, but I did have a lot of fun. Like every theatrically inclined child, I wanted a career on Broadway, but due to my fatigue, even community theatre as a hobby gradually became impossible.
There were lots of other professions I considered as well. I went through phases; I wanted to be a psychologist and then a medical doctor (although getting a D+ in freshman biology kind of made me realize that was unlikely). In college, I took my lifelong interest in history and the Holocaust and decided I wanted to be a human rights lawyer.
But it had become obvious that a 9-5 job (at least as a long-term thing), wouldn’t be something I would be able to do. It would be too difficult for me, leaving me utterly exhausted and unable to enjoy life beyond working — I can imagine I would come home at 6, fall asleep, and not wake up until 8 the next morning, just to do it all over again).
On the other hand, my fevers and flu-like symptoms would mean there would be way too many days when I would miss work, making me unreliable, no matter how good I was at my job. These revelations made me have to rethink my entire life course, something that happens often to people with lupus.
Making a New Life Plan With Lupus
Instead of being a human rights lawyer, I have decided to pursue a Ph.D. in Holocaust history, although I have had to make some adjustments to fulfill that dream. Instead of going to school in the US where teaching is a requirement for a Ph.D., I decided to get my degree in the UK.
Although this means I do have to pay out of pocket, it also means I can work at my own pace. And instead of a grueling teaching schedule, I teach courses on the Holocaust online through American universities. This allows me to gain experience while grading papers and student responses in my own time (within reason, of course).
Additionally, I work on a blog that gives me a good chunk of passive income, and I thoroughly enjoy doing it. In the future, I’d like to continue teaching online and/or teaching a few classes in person each week, in addition to working as a freelance educator with theatre companies, schools and museums.
However, settling into this career path hasn’t always been easy. There are so many things (like participating in amateur theatre) I am unable to do simply because my illness makes me unreliable. And this is a really difficult thing to come to grips with, especially if you are diagnosed in your 20s or 30s.
It can feel isolating as well, as many of your friends are constantly complaining about how exhausted they are after juggling a 9-hour work day, two-hour commute and then working out or doing whatever their favorite hobby is at night. This is the worst to listen to for me, because I would do anything to be able to have a life like that.
Like many other lupus patients, I worry a lot about the future and whether or not I’ll be able to make ends meet or create a sustainable income with the career path I’ve carved out for myself. I wonder if I’m going to be living in my parents’ basement at 40 and the sheer horror of that scenario makes it difficult to be completely okay with the fact that a 40-hour work week is out of the question.