Having lived with systemic lupus since the age of eleven, I have had the unique advantage of refining my positive perspective on chronic illness for decades. Full disclosure, this is something that hasn’t always been easy, because lupus can be one heck of a killjoy. You may have heard the saying, “the rain falls on the just and the unjust,” well, there have been moments in those 28 years where I have felt utterly soaked to the bone. In fact, in the darkest moments of my lupus journey, there were moments when it was so painful and all consuming that I succumbed to deep despair, and wondered if there would ever be a time that I wasn’t struggling to stay afloat amidst the wake of the SS Lupus.
It is estimated that over 5 million people worldwide live with this incurable autoimmune condition, a disease that affects 1 out of every 250 African American women in the US. Chances are, you could be reading this, having just been diagnosed with lupus or another chronic illness.
So, this is for you.
Whether you have had lupus for a few days or a few decades, take heed of these three truths: 1) you’re not alone 2) this is hard, but it’s not the end of you, and 3) it’s okay to not be okay sometimes, however, it is not okay to stay there and let lupus steal your joy and your life.
Helen Keller once said, “The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.”
As you begin to process your diagnosis, it is important to remember that though it may not feel like it, everyone has sorrows, sickness, and sadness. Everyone has hurts, hang-ups, and horrible times, whether you have lupus or not. It’s pivotal to acknowledge that everyone has troubles, and you are not alone in yours.
There is no denying that this is hard, but it’s on you to decide between two roads; the road that makes you bitter, or the road that makes you better. You have been given the opportunity (yes, opportunity) to put your courage to the sticking place and learn, grow, and become who you are meant to be in this life.
And you are meant to be chronically fabulous.
Here are some tips to help you establish your potential to become chronically fabulous and grow where you are planted, even if you are currently trying to find your footing among the rocky and often temperamental lupus terrain.
- Cultivate an attitude of gratitude: When you wake up in the morning, no matter how much noise your lupus is producing, say these words to yourself “I CHOOSE JOY.” Then try counting your blessings – not your calamities.
- Remember your value: You are not of less value because you have lupus. Author Max Lucado once stated, “You are valuable because you exist. Not because of what you do or what you have done, but simply because you ARE.” If you work/don’t work, have children/don’t have children, etc., it does not determine your value, and neither does your diagnosis.
- Let go of the past: Henry Wadsworth Longfellow once said, “Look not mournfully into the past, it comes not back again. Wisely improve the present, it is thine…” Be mindful of who you are in the present, accept the beauty of where you are today. You can’t grow where you are planted – if you are relying on yesterday’s sunshine. It’s gone.
- Welcome new experiences: Try to make an effort to be a part of the land of the living. Remember, you will have lupus if you stay home or if you try and be social. Isolating yourself (in many cases) will only lead to a diminished self-worth, depression, and shame. After living with lupus for 28 years, I have learned that getting over the mental hurdle of stepping out the door is a hard one, but is usually very rewarding. I guarantee if you make just the smallest effort (maybe that means going to coffee with a friend, or walking your dog around the block) you will not regret it. Say yes if you can to new experiences, even if your first instinct is to say no.
- Love thy neighbor: I believe St. Francis said it best, “It is through giving that we become chronically fabulous.” Well, I may have taken a creative liberty with the end, however, one of the best ways to break yourself of focusing on your chronic illness is to focus on serving someone else. A study done at the University of Virginia found that merely witnessing acts of kindness, loyalty, and heroism created a significant elevation in mood and increased the desire to perform good deeds. According to happiness researcher Sonja Lyubomirsky, PhD, those that participate in helping others have a generally more joyful attitude. She states, “There are lots of consequences that come from showing kindness that make you happier and help you stay happy.” She adds, “…and being happy is the key antecedent to joy.”
As I close, I implore you to take a moment of reflection. If you feel like your chronic illness has cast a dark shadow on your day, remember, shadows only exist because there is light somewhere. Keep moving forward, focus on the light.
Remember this: there is NO ONE else designed to learn from this experience, at this perfect moment in time, to show others that they can be chronically fabulous too.
Kelli Roseta is a lupus advocate, award-winning blogger, 28-year lupus survivor, and the creator of the nonprofit, More Than Lupus. The mission of More Than Lupus is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations improved quality of life, and (ultimately) a cure. You can visit her website at www.morethanlupus.com