“Oh God, I am so tired. Each breath is shallow. My strength has melted away and hope is hidden behind a wall. I don’t even want to crawl out of bed. I feel alone. The parenting. The endless to-dos. The juggling too much. The spread too thin. Oh God, I cry out to You from the ends of the earth: Show me again how this works-how You bring dry bones to life. Help me.” - Kate Bowler, Good Enough p.59
Having lived with systemic lupus and multiple overlap conditions since the age of 11, I have been entrenched in valleys of knee-deep exhaustion and frustration more than a few times in my 30+ years of chronic illness. Often feeling like I was at the end of my rope, dangling with no help or rescue, I sought peace and comfort in my body and validation in others that seemed either fleeting or simply unattainable. With every dip in my step, I felt guilty for not wanting to “stay positive” and be the “lupus warrior” I had been enlisted (without my consent) to be.
I wonder how many of you reading this have also felt those moments of lament as you navigate an illness that appears relentless and, often, all-consuming. Wondering how to stay upbeat and optimistic, on top of life and organized, focused and goal-oriented, when all you want is an assemblance of your B.L. (before lupus) life back? I'm curious how many of you cringe when a chronic illness influencer shouts, “Pick up your sword and fight this disease!” on social media? You contemplate throwing your phone in the trash, but wonder if you have any spoons left to retrieve it later to watch episodes of “The Great British Baking Show” after the anger has settled. (What only me?)
I have cringed, not just at those influencers, but at myself. Because I have been that toxically positive person in my past, I have said all the excessively upbeat quotes, the “faked it til I make it’s” and the “blessed in this mess’s” and have undeniably been in denial of the reality of my illness and how much it can just plain suck. (BTW, even saying the word “suck” is only something I have recently allowed myself to say, and it FEELS RIGHT!)
Let me be clear; I am not here to beat up my former self since, in many ways, I acted that way and said those things in order to survive. It was a coping mechanism for me, wrapping my situation in positive “certainties” because clearly, prosperity doctrine was my only solid ground. I thought that if I allowed myself space not to be positive, I would be engulfed by negativity, and my true thoughts and feelings about my crummy situation would consume me. Asking questions and wrestling with my discomfort, for me, was a product of a lack of faith. Or so I thought. I was under the incorrect assumption that there are “good” feelings and “bad” feelings, and too many “bad” feelings will, like a small crack in a windshield, spread until my whole mind, soul, and body shatter to pieces. Oops. Even my nine-year-old knows that is wrong. And as Shannon L. Alder adequately states, “Feelings are something you have, not something you are.”
Maybe you are in a place where you need the rally cries, the “pull yourself up from your bootstraps” mantras, the “everything happens for a reason” talk, and the “there is a purpose for this dumpster fire” affirmation. If that is where you are at, go right ahead and write it on your bathroom mirror. Zero judgment. Remember, I and many others have all been there.
I am more concerned with the over-abundance of “Pollyannish” slogans and mindsets that can lead to long-term adverse psychological and even physical consequences because of avoiding the reality of what’s happening and how you really feel, particularly in the hard times.
I love the quote by Zora Neale Hurtson that says, “If you are silent about your pain, they’ll kill you and say you enjoyed it.” I don't want to appropriate it because I know she is referring to racial injustice here, but I think when we look at the human condition, we must acknowledge all parts, even our pains. Whenever possible, "Share your weaknesses. Share your hard moments. Share your real side. It’ll either scare away every fake person in your life or it will inspire them to finally let go of that mirage called “perfection,” which will open the doors to the most important relationships you’ll ever be a part of.” –Dan Pearce
The Setbacks:
Our setbacks with lupus are incredibly frustrating. In my experience, sometimes it can seem like I am making such progress, getting into a grove, then BAM! The explosion of some new fire that I must divert all my attention to and extinguish. It reminds me of the apocalyptic line from the Lord of the Rings that says, “Always after a defeat [evil] takes another shape and grows again.”
In these times, I want to scream to the Heavens and shout, “When is enough… ENOUGH!?! How much more do I have to go through to prove that I can “handle” this? Haven’t I proven that yet?” In these moments, It is challenging to stay motivated and, dare I say optimistic, that things will improve.
I know I am primarily expressing my lived experience, and you may be reading this feeling it is a tad hyperbolic, so I want to say this. I cannot tell you what your journey will look like and feel like if you have experienced a setback or are currently dealing with one. No matter where you are in your journey, I hope these pointers are as helpful to you as they have been to me.
Remind Yourself These Three Truths: In certain recovery groups, they talk about the “three C’s.” Though chronic illness is different from addiction, I find these statements very helpful to use.
You didn’t cause it.
You cannot control it.
You cannot cure it.
Sometimes the blaming we place on ourselves is more damaging than the actual symptoms. If we experience a setback, we must remind ourselves that this is not a personal failure. Nor did we cause this. A bullet has no conscience; neither does lupus nor an automobile gone out of control. Pain is the price we pay for being alive. You haven’t failed because your chronic illness flared unexpectedly, causing you to cut back from work or school. You haven’t failed because you need extra help with your little loved ones. You are NOT a failure if you need SSDI, or mobility aids, or pain meds. It is pivotal to not take the setback out on yourself or become self-critical. It is also essential to not let others diminish your worth during a setback. As Dr. Amy Kenny states, “May you have a deep sense of your worth and value, even when those around you question it.” 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, educational contributions, weight, wealth, or 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.”
Remind yourself that, in these times, surviving day-to-day really is enough. Lay down your sword. Take off the superhero cape. Let yourself be human.
Lean Into The Grief: Being positive all of the time when dealing with chronic illness is unrealistic. There I said it. It is natural and healthy to allow yourself to feel sad, disappointed, and angry. There can be negative consequences to avoiding the reality of your setback, one of which could lead you not to take care of your needs during that time.
You may not realize it, but you might actually be grieving the time you lost, the job you had to step away from, the “could haves,” and the “should have beens,” in addition to the setbacks to your health. As with any other type of grief, we must bear witness to its unexpected waves. Allow yourself to feel these freely, and consider finding a counselor, psychologist, or mentor to help.
“When we move through pain and we release it, we fear there will be nothing, but the truth is, when the pain is gone, we are connected only in love.” - David Kessler, Finding Meaning
Be An Encourager: “You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering.” - Henri Frederic Amiel I love this quote because we can honor our story and our grief by supporting others. According to happiness researcher Sonja Lyubomirsky, Ph.D., those that participate in helping others have a generally more joyful attitude. She states, “There are many consequences that come from showing the kindness that makes you happier and helps you stay happy.” She adds, “…and being happy is the key antecedent to joy.” Even when you can't leave the house, you can still send encouraging emails or share insights online. You can validate and support by showing up to our support groups and listening. Simple as that.
“Tell me, what is it you plan to do with your one wild and precious life?” - Mary Oliver.
Closing: As I close this blog, I want to remind you that pain is never the whole story. Though it is easy to focus on all the things that are “wrong with you” in this season, laying down the blame, honoring your feelings and grief, and encouraging others may help you see there is more to all this life than lupus. Lupus is hard. But that doesn’t have to make you hardened.
I chose to end this in the same way I began this blog, with a blessing from Kate Blowers's book, Good Enough. And remind you that, "When Enough is Enough" YOU are enough.
“Blessed are we, the weary and weak and sore, with only the merest ember left burning but who still say; Breathe on me, God. Breathe life into my tired body, my heavy limbs, bring light to the dark corners of my mind. Breathe comfort into my sad heart.”
Written By:
Kelli (Casas) Roseta
Sources:
Finding Meaning, By David Kessler , Scribner Press, 2020
Good Enough, By Kate Bowler and Jessica Richie, Convergent Press 2022
My Body Is Not A Prayer Request, Dr. Amy Kenny, Brazos Press 2022
**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 2023.
February 2023