Why 'Who Are You?' Is So Hard to Answer as Someone With Lupus

I have gone back and forth about posting this due to pure embarrassment.

A little over a week ago my husband, Scott, and I went to one of his favorite eateries in Portland to meet up with his childhood friend (who I will refer to as “Buddy”) and his wife who were visiting from the East Coast. I was extremely apprehensive about this dinner, not because of who we were meeting, but because this was my first encounter with what now seems to be a pretty amazing couple. Meeting new people is hard for me, which will be explained further down. Anywho, of course Portland traffic was awful and we were five minutes late (if you know me, five minutes early is late) but we made it. After introductions of the wives, Scott and Buddy were chatting and catching up.

Suddenly Buddy looks at me and says, “So, who are you, tell me about you.” I sat there with what I am sure was a blank expression for a few seconds unable to say anything, then I spit out, “What would you like to know?” an easy way out of this awkward situation in which I couldn’t answer his question. You see, Buddy’s question was truly a simple question, a typical question that is asked when meeting someone. Before my diagnosis of lupus I would have said (proudly and without hesitation) something like, “I am a mother to three amazing children, outgoing — someone who can make a friend anywhere she goes, an avid runner, and someone who is constantly seeking knowledge.”

Likely sensing my uneasiness, he and Scott started chatting again. Phew, I was saved, or so I thought. A few minutes go by and Buddy looks at me again and asks what I do for a living, which was an easy response although I still hesitated (what is my problem?). “I am a stay at home mom but I miss working,” I finally managed to say. (Side note: Being a stay at home mom is work, it is the most difficult job I have ever had, but I miss the adult interaction and feeling like I am contributing to our family in a financial way.) He then asked about my hobbies. “Well, I guess I enjoy crocheting, I mean I am not good at it but it gives me something to do.” Wow, I am sure I seemed like the least motivated introvert he has ever met (which I am sure is not the case… at least I hope not). Sensing what he thought was me being shy, he directed his attention back to Scott.

I was completely caught off guard by my inability to answer such a simple question. I left dinner feeling less than adequate. I came home and marinated on the question for a couple days trying to come up with something other than lupus to blame it on. (So at this point all of you reading this likely know I have systemic lupus erythematosus; however, Buddy and his wife were completely new people to me.)

So here is the thing: the reason why the question “Who are you” is so difficult for me to answer. For nearly eight years now I have claimed that lupus does not dictate my life. However, in that exact moment that he was asking me who I was, I realized that while I am still Heather, I am Heather with lupus. I am no longer an avid runner because of the significant amount of pain I feel in my joints. I am no longer as outgoing because it is hard to explain to people that I have to cancel our lunch date for the third time in two weeks due to the chronic fatigue or pain. I am no longer that person who achieves higher learning because there are days I have issues forming sentences and finding the simplest of words. No, I do not enjoy adult beverages because the thought of permanent liver damage from the majority of my prescriptions is terrifying. I do not work because I cannot sit under fluorescent lighting due to an allergy to them and the lupus flare they cause, in addition the fear of catching the office cold that always turns into pneumonia for me because I have a compromised immune system courtesy of the almost four years of weekly chemotherapy.

Cue the light bulb… Ugh, lupus does dictate my life. I am just along for the ride.

So, Buddy, if I get a do-over to the question, “Who are you?” here is my answer. I am a mom of three amazing children who are intelligent, compassionate, kind, and honestly at times a pain in the rump. I am the wife of your childhood friend. I like to crochet because even though I am not very good at it, it keeps my hands moving and when I finish an afghan I feel accomplished. I may not have a fancy job title or work in an office eight hours a day, but my hours of operation are 24 hours a day, seven days a week and 365 days a year and I hold many silly titles (Mom, chauffeur, housekeeper, nose wiper… you get the idea).

I am a lupus warrior. I fight the disease daily and most days I manage to do it with such grace that I hear quite often “You don’t look sick” or “You can’t feel that bad.” Your childhood friend Scott is the love of my life and I try to show him how much I appreciate him and what he does for our family daily. While lupus may dictate my life, it does not dictate my attitude towards it.

Buddy, I want to thank you for your simple question that made me think. What started off as pure embarrassment caused by my inability to answer a simple question turned into me being more accepting of who I am. It made me realize that I am still not completely comfortable with the disease, and that is OK. I am looking forward to being able to visit you and your wife over on the East Coast.