That smile on your patient’s face may conceal a great deal of pain that goes along with having lupus, much of which is not actually physical. Here, a patient in her early 30s describes how a lupus diagnosis changed almost everything.
I wish I could invite the "me" of 20 years ago to have a conversation. She was fearless.
The younger “me” was tough as nails. She wasn’t one of those kids who ran home to Mommy after a schoolyard dispute. Once, in grade 3 or 4, she got into a fight with a boy and threw him to the ground. He got back up and punched her in the face. She didn’t flinch, and she didn’t cry.
In high school and afterwards, life was unpredictable. She was in and out of the hospital. She often went to sleep not knowing what news she would get the following day. Still, she handled her struggles with grace and courage. She did her thing: She went clubbing, she went to bars with her friends, and she met people. Despite it all, her personality shined through and she maintained her self-confidence.
That toughness faded away in November of 1996, when I was diagnosed with lupus. I went from being a healthy, athletic teenager who used to ride my bike for hours to someone who spent weeks at a time in the hospital, so weak that I could barely get out of bed.
I do flinch now, and often I cry. I have been forced to adopt a whole new kind of toughness, because this new life can be tough.
Friends can hurt. I do keep in touch with old friends and sometimes hang out with them, but their success is discouraging. It’s tough to go on LinkedIn or Facebook and find them doing well, getting jobs and starting families, while you’re nowhere near that point in your life. In fact, you’re in the same place you were in even before going to school. I’m happy for them, of course. I just wish I was doing well too
Medications can be damaging. I went from being very social and outgoing to someone too shy to speak to others because of the drastic change in my appearance that medications caused. The puffy “moon face” of prednisone was most noticeable. It also caused stretch marks on my arms and legs, and caused hair to grow on my face.
People would often tell me when I was younger that I was pretty or cute. I don’t hear such compliments any more. When I used to work as a cashier, one customer liked to point at his face and puff out his cheeks and laugh at me. One of my colleagues said, “What happened, Florence? You used to be so beautiful!”
Relationships can be toxic. In relationships, even though I knew when I wasn’t being treated right, I wouldn’t leave. I felt like damaged goods, lucky that a man--any man--would want to give me the time of day.
Career planning can fail. I can't get a job in my chosen field of human resources (HR) to save my life. I have celebrated my 10-year anniversary with my current employer, working in customer service at a bank. I went back to college and completed my HR diploma in 2012, and have been applying almost nonstop for a position in HR. I have had two interviews, but no offers.
Being proactive may bite you. I have participated in lupus walks, in interviews, and so on. Much of this information is available with a simple Web search of my name. I often wonder whether recruiters see my name, Google me, and then decide against interviewing me because they see that I have an illness.
Nobody wants to give me a shot. Meanwhile, several of my friends have gone into HR and won promotions to manager or coordinator, helped by networking. I hope that if a role were to come up in any of their organizations they would think of me. I’m bright and I have a lot to offer too.