When we stop suffering in silence, we make room for hope
Lupus kills; don’t let silence be an accomplice
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I am willing to bet a penny to your nickel (wink) that if you often “don’t look sick,” you usually don’t tell anyone when you feel the stirrings of a lupus flare.
We all have different reasons for staying quiet and waiting before declaring how severe our symptoms have become. But I’m also willing to bet — still penny to nickel — that your hesitation has something to do with not wanting to burden others. You also may not want to give voice to the suffering.
Why not? There is power in our words. They hold death and life. Speaking things aloud may cause them to manifest, right? And it results in others carrying our issue. Voicing our pain keeps it alive, whereas silence kills it — until it doesn’t.
Over time, suffering in silence breeds fear, guilt, and shame.
Why our suffering deserves a voice
Stating that you are suffering, or that you have recently suffered, is freeing when done in a way that is comfortable for you and honors the family or friends you confide in. I am learning this more and more through my personal curriculum project.
To voice suffering is to clarify facts. For example, it’s saying, “When you saw me doing this, I was actually dealing with [these symptoms], and I was experiencing a very long flare.” Let them sit with that or ask to know more.
Using the word “suffering” is freeing. Tell your doctors when your pain and symptoms reach that level. It allows them to prescribe an additional or alternate treatment before your next visit. Systemic lupus erythematosus kills; don’t let silence be an accomplice.
That release makes room for hope to expand. Hope is an energy that helps us move through the pain and challenges caused by lupus. It fuels us to seek personal treatment and wellness routines that combine medical therapies with tested holistic practices. It turns the desire for a cure into action, such as researching clinical trials while seeking healing retreats.
Hope is active when you rethink how to manage your symptoms — whether it’s by adjusting the timing of your medication, tai chi walking, massaging your hands with essential oils, painting your fingernails, sticking with therapy, sipping hot tea with your love, playing cards with your favorite little person, listening to binaural beats for deep sleep, or modifying your work schedule. Hope is showering or bathing off the evidence of suffering — shampooing your hair, moisturizing your skin, getting dressed, and still staying in. These are all mini-cures that active hope brings.
Hope ignites forgiveness for every time your body was called a betrayer, an enemy, or an attacker, rather than a strong defender, a consistent harbinger worthy of our immediate attention and trust.
That’s a mouthful, I know.
We learn so much when we choose to live, not just survive, with lupus and its comorbidities. Sharing information about the disease’s effects on our eyes, kidneys, brain, heart, and joints also helps scientists researching CAR T-cell therapy, regulatory T-cells, discrimination, APOL1 gene variants, B-cell therapy, pregnancy, red light therapy, and more.
I am not suggesting we get a bullhorn and shout our pain from the mountaintops, but we cannot always suffer silently. Sometimes we have to wear the “L” on our chest as a reminder of our internal health battle.
The suffering is real, but the benefits of active, energetic hope are worth celebrating.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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