When a person thinks of the word “LUPUS” I would venture to say it doesn’t bring forth positive meditations. I mean, I don’t recall there ever being a commercial when an interviewer said to someone, “You’ve just been diagnosed with LUPUS! What are you going to do next?” And the person excitingly shrieks, “I’M GOING TO DISNEYLAND!”
On the contrary, most might identify the word with an acronym such as this:
L - loss of identity and future
U - undeniable fatigue
P - pain and suffering
U - unfortunate medication side-effects
S - significant mental and physical anguish that never ends.
Though there is no denying that the words above are associated with the complexity of the disease, it is important to remember that association and identification are two different concepts. Too often, we ( lupus patients) can allow our disease to swallow us up whole. We let it not only take over the rutter of our life, but we let lupus be the ship, the wind, and the north star that directs us, motivates us, and keeps us from moving forward. We allow lupus to become our identity.
Let me be clear, for someone newly diagnosed - it is part of the natural (and healthy) grieving process to feel overwhelmed, scared, angry, and anxious. It is important to be patient with yourself and show yourself grace as you go through this process of accepting your diagnosis. It is okay to not be okay at first, but there is a time when you need to make the choice to change your outlook on your illness. A time when you need to redefine what lupus means to you.
This blog is intended to help you navigate the process of redefining lupus, and by doing so, hopefully help you discover the purpose behind the pain, and how to not just live with lupus but thrive with it.
Take a moment to consider this new acronym:
L - love yourself because your value is not in your illness
U - understand setbacks are temporary
P - remember pain is inevitable, suffering is not
U - uncover your meaning through this experience
S - serve others by sharing your story.
Let’s break it down:
L - love yourself because your value is not in your illness.
You are not of less value simply because you have lupus. Furthermore, your value as a human being should not be based on your vocation, your educational contributions, your weight, your wealth, or your health. 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.”
As someone who has lived with lupus for 29 years, this is something I have to remind myself DAILY. Making the realization that your value is not in what you do, or in a number on the scale, or in how many “likes” you have on Facebook - can take time, but is essential in refining your illness and how you associate with it.
U - understand setbacks are temporary.
“For these light and momentary troubles are achieving us glory.” 2 Corinthians 4:17. Let’s be real. If you are living with lupus or a lupus overlap disease, there will be setbacks or what I like to call “valleys” you will traverse. Everyone has hurts, hang-ups, and horrible times. Though these times are challenging, it is in these times -when you feel like you are in the deepest, darkest valleys of your life, that you are tested and refined like a is diamond under pressure. 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.” Lupus setbacks are hard, but they are usually temporary. And through those times of trial, you have the opportunity to put your courage to the sticking place and learn, grow, and become who you are meant to be.
And what is that? You are meant to be more than lupus.
P - remember pain is inevitable, suffering is not.
A bullet has no conscience; neither does cancer or an automobile gone out of control. That is why good people get sick and get hurt as much as anyone. Pain is the price we pay for being alive. So though pain is inevitable, we must remind ourselves that suffering is not.
It is important to acknowledge the difference between pain and suffering. Pain is the physical sensations that tell us something is wrong. Suffering is the psychological interpretation that the sensations we are experiencing are awful, terrible, or unbearable. Taking time to analyse how you relate to your pain may help you to redefine it. If you describe your lupus symptoms as aching or throbbing - then you are describing something that is causing you pain. If you describe your lupus symptoms as dreadful and distressing - then you are describing something that is causing you to suffer. See the difference? And within your definition lies your power and resilience.
I read once, “Being sick or being healthy is not a matter of what God decides we deserve. The better question is, 'If this has happened to me, what do I do now, and who is there to help me do it?” Hypothetically speaking, if we lived in a fair world, where suffering and disease did not exist…who would we be as humans, as individuals, or as a society? The most powerful, amazing people are seared with scars. Pain is inevitable, staying in a cycle of suffering because of it - is completely a choice.
U - uncover your meaning through this experience.
“In the depths of winter, I finally learned that within me lay an invincible summer.” - Albert Camus. Take a moment to ask yourself, “Who would I be if I changed and grew with this experience? And who would I be if I didn’t?” Do you want your lupus experience to make you better or make you bitter?
“Tell me, what is it you plan to do with your one wild and precious life?” - Mary Oliver. Tell me, how can we take in the good of our experience and allow it to provoke positive transformation in our lives? Because “if we don’t transform our pain, we will surely transmit it.” Richard Rohr
It may take you time to uncover your meaning through your lupus experience. David Kessler, in his new book, "Finding Meaning" gives some thoughts that may guide you in this understanding process:
Meaning is relative and personal.
Meaning takes time.
Meaning doesn't require understanding.
Even when you do find meaning, you won't feel it was worth the cost of what you lost.
Your loss is not a test, a lesson, or something to handle...it is simply what happens to you in life. Meaning is what you make happen.
Only you can find your own meaning.
Meaningful connections will heal painful memories.
S - serve others by sharing your story.
“It is your job to honor your own grief. No one else can ever understand it.” - Davis Kessler. How do you honor your lupus grief? By showing others that they are not alone in theirs. We can find healing through community by uniting in these simple truths:
We didn’t cause it.
We cannot control it.
We cannot cure it.
But we CAN come together as a community and commit to living our best lives through it.
Serving others by sharing your story is not only one of the best ways to break yourself of focusing on your chronic illness, but it is essential in redefining lupus. 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.”
I want to leave you with this quote by Maya Angelou:
“My mission in life is not merely to survive, but to thrive; to do so with some passion, some compassion, some humor, and some style.
Kelli is a lupus advocate, award-winning blogger, and founder of More Than Lupus. She is also a 29 year lupus warrior. Kelli lives in Portland, OR with her husband Nick, son Luca, and dog Jax.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.