The thought of becoming a Lupus Ambassador started for me while I was at the 2014 Lupus Walk for Hope and listening to the stories shared by the ambassadors before it began. I thought to myself, “I really want to be in that role so I can inspire others the way they inspire me.”
After finding out that I had the honor of representing the Lupus Foundation of Minnesota as one of their ambassadors, I was overjoyed. I set out on a mission to raise awareness for lupus because very few people know about the disease and what it entails.
When I first started in the role, I had no idea how many people I would be able to connect with, both living with and without lupus. It means so much to me to have a support system within the community of others living with lupus. I didn’t know how much it would affect me to really hear others’ stories and journeys, and meeting others with lupus made me feel like I wasn’t crazy for what I was going through. Hearing their stories made me feel less alone, and I think it is so extremely important to be able to connect with others who are sharing a very similar experience to your own.
Living with lupus can, at times, be extremely lonely. As much as your family, friends and co-workers support and love you, they will never really and truly understand how it feels to live in a body that has this terrible disease.
Although not one person living with lupus has an identical story to another, it is important to talk about how we are feeling and what we are going through on a daily basis. Connecting with others made me extremely happy and gave me more hope for the future. I feel so strongly about being able to share that feeling with others that I am now going to facilitate a support group for people living with lupus. I am tremendously excited about it and will be happy to connect with anyone who would like to just talk. Trust me, it helps!
I am extremely fortunate to have such a huge support system which includes a loving boyfriend, family, friends, co-workers and now others living with lupus! It makes such a significant difference in my life having these people to lean on.
It is so important that we continue to spread the word about lupus so that people know what it is and how it affects us. Living with an “invisible illness” is often difficult for our family, friends and co-workers to understand. One day we look completely normal, happy and energetic, and the next day we are unable to even get out of bed in the morning because of how miserable we feel. For someone looking in from the outside, that would be very hard to understand.
I think it is difficult for loved ones to see me out having fun and sometimes think, “Well, isn’t she sick?” Yes, of course, I am sick. But sometimes we push ourselves to make it to parties and events even though we feel horrible. What kind of life would we have if we were always in bed?
I think it is essential for people to understand that we, like everyone else, want to feel good and don’t want to be sick. It is important for others who might judge us to really understand the disease, and how there can be very good days and extremely bad days. We never know when the bad days are going to strike. We want love and support, and sometimes a shoulder to cry on. Living with a chronic illness is very hard to grasp at times, even for those of us living with it. I have gone through periods of extreme denial and still struggle every single day to grasp the fact that this is something I am going to live with for a very long time, at least until we find a cure.
It has been an absolutely awesome experience being one of the faces and the voices for the Lupus Foundation of Minnesota for 2016. I am so happy to have had the chance to meet such extraordinary people. I will continue to connect with and support others, and I encourage you to reach out and connect with me as well. I have had so much fun at all of the events this year, and I can’t wait to attend them all next year!
It is a mission of mine to continue to push for a life without this disease. Raising awareness, funds for research and more education on lupus will help us move toward a day where we can say, “I used to have lupus.” I am excited for the day when I will be able to say those exact words and I am sure many others are as well.