Nicole’s Challenge with a Lupus Communication Gap

28 Mar

On Tuesday, March 20, Human Genome Sciences and GlaxoSmithKline released the results of a new survey highlighting a communication gap between people with lupus and the people who care for and about them. Read the LFA’s response here.

Nicole has shared with us her experience with the communication gap between people with lupus and people who care for and about them below:

Knock on wood, for most of my lupus journey, I have fallen into the ‘perfectly healthy’ appearance. My major health issues have been leg and joint pain and the butterfly rash across my face (when I’m tired). I graduated from college and am able to hold a full time position. I hang out with friends and family on a regular basis and I enjoy staying active with yoga, running and biking.

Over the years, it has been a challenge for me to express to people that I do have lupus – to be honest, I’ve kept it quiet for the most part. I didn’t want to be the girl with the disability or disease – I wanted to be me. Recently, I explained to a few people that I have lupus. Their automatic response, “But you look healthy?” I simply reply, “Lupus is a very complicated disease, you can have kidney failure or joint pain. Every case is very different, there is no specific list of symptoms.” Unfortunately lupus does not win the popularity contest either. Most people have never even heard of lupus, which is another challenge when explaining the disease to people. I do the best I can and learn from it.

My family members and close friends have been with me since my diagnosis (age 16). It was hard at first, no one knew what lupus was and everyone deals with these things differently. Through the years, we’ve learned to accept it, deal with it and try to live a normal life. Every once in a while, I still a get a random question from them. That’s ok, I am happy they are wanting to learn about it.

This has been a very long and ongoing process. Even to this day, I learn new things about Lupus. I was a teenager when diagnosed, and I had no idea what was going on. I wanted to live a normal life and for the most part I have. Having lupus for 10 years, you learn how to be patient when explaining it and try to be as clear as possible.

I am learning to be more open with people and would like to share as much information as I can. I still tense up when I tell someone new, but become more comfortable each time as well. As I said earlier, this is an ongoing process, a learning one at that!


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