Sharing the Journey: Resilient Lupus Warriors

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:

Since your lupus diagnosis, how have you remained resilient and what has kept you motivated throughout your lupus journey?

I have always believed that I never want to label myself as a victim of lupus, I want to be labeled as a survivor of lupus. I never let lupus define me or who I am. I think grappling with this disease has actually made me a strong person. I have experienced hardships at a young age that most adults have not had to deal with. Being diagnosed so young at 12 years old allowed me to grow and make changes in my life to accommodate my illness. I think it was easier to be diagnosed then, because now I have a lot going on in my life and I don’t think I would’ve been able to handle it had I received a diagnosis today. Overtime, I have grown to live with lupus and at 12 years old, I didn’t fully understand what was always happening. At 21 years old, I am about to graduate with my master’s degree. I have never been prouder of my achievements. I will always prosper and strive and never let lupus hold me back. I am a survivor and I am strong. I am my own hero. – Kyra 

Since my diagnosis, my faith that God has a bigger plan for my life and is using me as a testimony for someone that is ready to give up keeps me resilient. My family and friends keep me motivated to keep fighting and pushing through my bad days. Also talking with others going through the same thing and knowing that we're not alone in this fight motivates me to keep going, keep talking and to keep raising awareness. – Jaime  

Getting involved is the best way to go! You feel rejuvenated and even like a super hero. For example, talking to Congress on Capitol Hill gave me a sense of grave importance and more fight than I have ever had. I will win this thing and so will you!!!! – Angel

Knowing that there are others like me and I’m not alone has helped so much. I’ve made lifelong friends that I wouldn’t have met otherwise. – Leslie 

I have stayed resilient by finding ways to continue to live my life with energy and gusto while giving my body the time it needs to recuperate. I have certain things I do to help my body relax and recharge when it needs to and I try to only commit myself to what I can handle. By controlling my schedule and having a toolbox of strategies to help give my body rest, I can continue to do the things I want to do while keeping in touch with my health! - Becca

I have had lupus now for 17 years, and I have to say that sometimes it feels hard to stay resilient and not get discouraged. However, for me personally my family is what motivates me to take an active part in my healthcare and stay healthy for them. I want to be involved with them and enjoy all the fun activities with them. I also feel that being a nurse and advocating for patients has helped me to build the skills in advocating for myself. I think that no matter what you are going through in your lupus journey there is always something out there to pull you through and motivate you, you just have to find it! – Roxi 

When living with lupus, it’s important to know that you are not alone in your journey. Oftentimes, surrounding yourself with friends and family for support can alleviate stress brought on by this debilitating disease, and help motivate you to overcome certain hurdles each day. You might also be interested in connecting and talking to those who understand and share similar experiences to your lupus journey, and if so you can find a care and support community through the Lupus Foundation of America’s national network, which consists of chapters and support groups across the country. Remember, lupus does not define you, and by learning how to take charge of your health,  advocating for yourself and prioritizing self-care, you will build resiliency and live a better life.