personal story

Conducting my life around lupus

Lupus Foundation of America

Resource Content

“Well obviously the tests show that you have lupus, but you knew that, right?”

That was the first time someone had told me I had lupus.

After spending time in the sun in July 2012, I had redness on my skin as well as some other symptoms that would not go away. A doctor at a walk-in clinic asked if I’d ever been tested for lupus and was shocked when I told her I hadn’t. I received a phone call in late August while I was working in my office. The nurse on the phone told me that my blood tests were “normal,” for someone with lupus. After realizing this was the first time someone had told me that, she felt terrible and immediately switched me over to someone else on phone. I made an appointment with the rheumatologist who confirmed the diagnosis.

I was scared and confused, but meeting with the doctor and beginning conversations about possible treatments made me feel better. Eventually, I was happy that I finally had an answer. Knowing what was really going on with my health meant that I could be treated properly.

Less than a year before I was diagnosed, my grandmother who had lupus passed away. Her passing was not due to her lupus; however it was hard to mentally and emotionally separate the disease from her passing. Since my diagnosis, my family and close friends have been my support – especially my husband Bryan, who is always there when I need him the most. Without them, I would not have achieved all that I have. They help me push forward and fight through the symptoms I face every day. My rheumatologist has also been fantastic since he is always a phone call away when I need him to call in an emergency prescription or give me advice as to how to deal with a current flare.

As a high school teacher, I need to be on my game every time I step in front of a classroom. Even if I am feeling fine the night before, there are mornings that I wake up that I simply cannot get into work, so I always have emergency lesson plans prepared just in case. Additionally, my work as a band conductor is very physical takes a lot out me as well. There are some days that I cannot hold my baton, so I have learned how to conduct without it, using just my hands. I need to be able to show the music regardless if there is a baton or not, because in the end it’s all about the music. My health cannot get in the way of it, so I need to learn how to get around it. Lupus has also affected my social life, since I occasionally need to cancel plans or leave early from an event simply because I am too tired or in too much pain to stay. I am thankful that many understand now so I don’t feel guilty or bad when something like that occurs.

I’ve only recently begun to tell people outside my family that I have lupus. I was embarrassed to make it public, but began to realize that the more people know what is really going on, the more they will understand and be able to help me when I have a flare. Now that it is public knowledge, I want to connect with others who also suffer from lupus, especially with people my age, to share stories and have people to talk to who are going through similar things. This year I participated in the Walk to End Lupus Now™ in West Hartford, Conn., for the first time. Reaching out and making those connections have helped me get through the obstacles of living with lupus so that I no longer have to feel alone.

Amy Dauphinais

is a high school music teacher that has been living with lupus since 2012.