Sharing the Journey: Life Decisions
What was the biggest life decision you had to make because of lupus and how did you handle it?
"I moved cross country away from my family and my doctors to be with the man I love who supports me and takes care of me. I continue to chase my dreams and be as normal as I can be while still dealing with my illness. One way I have handled my life decisions is through the support of my family and fiancé. When I realized I had people who would have my back and support me through any choice I made, I knew that I could get through anything." --Michelle Piper, age 26
"The biggest decision I had to make because of lupus was to stop going to college on campus. The college is located in downtown Chicago and I had to take the subway in addition to walking back-and-forth to classes. Sometimes I would have to stand in line for hours to register for classes. This eventually took a toll on me physically and I had several flares because of it. I was angry and depressed but got over it and finished my degree online and was able to join my graduating class." --Sabrina Nixon, age 49
"When I was diagnosed, I had to learn to cut down on the amount of busyness in my life. It's very hard and frustrating for me to see other people my age more involved in activities than me. To combat this harmful tendency of mine to overcommit and overexert myself, I have built a support system of people who encourage me to rest and relax. At college, I know people who work out every day, hold multiple jobs, are involved in several clubs and leadership positions, and carry a 20+ hour course load. I always want to do more - I always want to work out more and harder; I want to stay up later to study enough to get that top grade; I want to be involved with several clubs. But that is just not possible for me. I have learned the hard way that my body cannot handle a great deal of activity and stress paired with very little sleep, even though many college students my age can." --Becca Mighell, age 19
"I feel like most of the decisions regarding Lupus were made for me, but deciding to stay on top of treatment and continuing to keep up with doctor's appointments, whether I'm experiencing a flare or not, is a life decision and commitment that I have made recently." —Madison Palmer, age 23
"The biggest life decision I had to make because of Lupus was learning to say “no.” There are times when I really want to join my friends as they head out on a Friday night, but my body is fatigued or pained. I’ve learned that the demands of my body come first. I had to learn not to feel guilty about cancelling plans at the last minute, or missing out on some fun times with my friends. The better I take care of my body today, the more fun I can have later. Otherwise, I could end up in a month-long flare. Friends who have your best interest at heart really understand and support your decision to take care of yourself first." —Kayla Britt, age 25
"The biggest life decision I had to make because of lupus is taking time off from work to catch up on much needed rest. Getting plenty of rest is very important when having lupus." —LaTrease Brown, age 30
"To admit that I am not that strong woman who can be everything and anything she wanted to be. In all honesty, it's still hard to admit at times. Mainly because people treat you differently or don't take the illness seriously. Trying now to work on the decision to not take them seriously too." --Adriana Van Ham, via Facebook.
"To accept that daily medicine and activity restrictions are a part of life and my tiger stripes, bruises, and battle scars are like a badge of honor because they represent the near death flares I survived." -- Fatima Weaver, via Facebook.
"The hardest thing to accept was the unknown. I had to accept that I have no control & that I can't push myself past my limit. I can't be superwoman & supermom. I can only be enough for that day." -- Ciera Monaye, via Facebook.
"I had to learn to say "no" for the first time in my life. It has been very hard not to have the stamina and strength to do all I want to do in my life. Setting different priorities now, so that I can have as good of quality as possible. My husband is very supportive and I have a fantastic rheumatologist. After losing my first husband to cancer, I realize that things could be worse. Prayer and knowing that God has this gives me hope." --John Susie Graham, via Facebook.
About Sharing the Journey
People like you reach out to us regularly wanting to share their story. Their reasons vary – they want to help others; they want to ease suffering; they want to be heard; they want to connect with others like them.
Above all, they want the biggest lessons that they have learned in life to have greater meaning. This is where you come in. This series – Sharing the Journey – is by you and for you. Through this series of articles intended to educate and inform, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.
Not only are our stories connected by lupus, but our stories are also connected by hope, inspiration, and determination to live a life that is not defined by lupus. We have more in common than we know. We invite you to expect the unexpected by experiencing the journey, together.