Jun. 07, 2017

Sharing the Journey: Explaining Lupus

lesser known facts about lupus

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. This month, we asked Sharing the Journey participants the following question:

What's the one thing you want people who don't know anything about lupus to know?

One thing I want for people who don't know anything about lupus to know is that number one you can't catch it. I am not contagious. Two, it’s not cancer. It’s not like cancer as they are two completely different diseases neither of which I would wish on anyone. Three, just because I don't look sick doesn't mean I'm not. I have spent years of my life trying to be “normal” and it doesn't always work out. I push myself to the limit and then I am forced to recover, so just because I went out last week doesn't mean I can this week.  Finally just because I am sick doesn't mean I have to live my life in a bubble or hospital. There is a balance and some days it's easier to find than others. – Michelle T.

People who don't have lupus should at least know that is exists. Before I was diagnosed with lupus I had no idea it even existed. Everyone always hears about finding a cure for cancer or other big problems but never about lupus. This disease is just as serious as those and I want people to know how hard it can be for the people faced with it daily. We need to raise more awareness so this disease can be researched more in hopes we one day can find a cure. – Kylie K.

One thing I want people who don't know anything about lupus to know, is that a lupus patient's "tired" is much different than a healthy person's "tired." This is not to take away from anyone's struggles or levels of fatigue, but with lupus we never know how hard the fatigue will hit us on any given day- mentally or physically. We never know if we will make it to work or school every day during the week, we may have to cancel plans at the last minute because we are just too tired to show up, and we may not always be ourselves when others expect us to be chipper.  If you have a friend or a loved one with lupus, please research lupus fatigue. – Kayla B.

I want people to know that there is no cure and limited treatments are available to those living with lupus. Awareness and support are needed to better the lives of those living with lupus. – Andy L.

The one thing that I want people to know is that I am not defined by my diagnosis. While lupus is something that I have to live with for the rest of my life, I will not let it dictate how I live, nor will I let it consume my entire being. We all have the ability to make choices. Every morning, I commit to living the healthiest lifestyle possible because that’s what I know my body needs in order to thrive. Since having been diagnosed a year ago, I have not suffered through a flare nor have I endured any setbacks. I put myself first. When people hear that I have lupus, their initial thought is to feel sorry for me or to make general assumptions that I will not live a normal life. I never want anyone to feel sorry for me. If anything, since having been diagnosed, my life has changed for the better. Moreover, I am positive that it will continue to improve. I have embraced my diagnosis and have utilized it as a new beginning. Living with lupus is more than manageable; it’s about committing to a healthy lifestyle that is best suited to my needs. I choose to take control of my diagnosis and not let lupus define me. – Victoria G.Five people with lupus share what they want people who don’t know anything about the devastating disease to understand.