For a long time, I carried my suffering as a personal burden, convinced it only affected me. But as I grew older and took a step back, I wondered: How do my loved ones experience this reality? How do they perceive my illness daily?
Diagnosed with systemic Lupus Erythematosus at the age of ten, I’ve always been fortunate to have great support. As far back as I can remember, my loved ones have been there to encourage me and lift me in the toughest moments. However, over time, I became aware that this illness didn’t just weigh on me, but on them as well. They share my pains, worry about my future, and face, in their way, the challenges posed by an autoimmune disease.
Even though they can’t fully understand my reality, it’s still unfair to keep them at a distance since they don't live it. Their suffering, though different from mine, is very real. They feel helpless in the face of my pain, the frustration of not always knowing how to help me, and the uncertainty regarding the progression of my illness. By carrying these worries, the people who are my refuge may also feel overwhelmed, exhausted, and even step back. This invisible burden they bear in silence deserves to be recognized, just as much as mine.
But beyond the worry, there’s an invisible suffering that my loved ones carry without ever showing it. This burden they accept, often without even talking about it, is sometimes heavier than physical pain. The weight of uncertainty, the anxiety about the future, the fear of my illness worsening—this all affects them more than they want to admit. I’ve seen my loved ones struggle against this silent suffering, trying not to show it to me, but always keeping an eye on my condition, hoping for better days.
Too often, I’ve wanted to protect my loved ones by minimizing my pain, by silencing my concerns, or by avoiding difficult conversations. Yet, by doing so, I unknowingly pushed them away. Expressing my needs, sharing my fears, and accepting their sincere support has strengthened our bonds rather than weakened them. Sometimes we underestimate the power of communication and the importance of simply saying, “I’m not doing well today” or “Thank you for being here.” These words can soothe, both for us and for them.
There have also been moments when I felt misunderstood, moments when loved ones, though well-meaning, didn’t know how to support me. A simple comment, misinterpreted, could make me feel even more isolated in my suffering. But when they took the time to ask how I was feeling, without judgment or pressure, that’s when I truly felt heard and supported.
Uncertainty is a silent enemy that eats away at the minds of the sick, but also of their loved ones. How do you live with the constant question, “What does tomorrow hold?” My family, my friends, just like me, have had to learn to accept the impossibility of predicting the future. At first, this uncertainty paralyzed us, but over the years, we’ve learned to live with it, to adjust our expectations, and to find a form of serenity even in the face of the unknown.
Yes, living with an autoimmune disease is a daily battle. Yes, we have to manage a thousand things at once. Yes, sometimes we feel like no one understands us. But locking ourselves into that vision would be selfish. The world doesn’t revolve around us. We must also be attentive to those around us, because without them, our morale would be much weaker, and our outlook on life much sadder.
So, for your well-being, don’t shut yourself off from those who support you, who are there no matter what. Instead, distance yourself from those who throw empty words around and offer nothing constructive. There are many of those. But not those who, even without fully understanding, find the right words and encourage you sincerely. These people give us a second wind in our fight against the disease.
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