THE DAILY PRODUCTION OF APPEARING WELL AS A CHRONICALLY-ILL PERSON.

Living with a chronic condition makes the world seem like a stage, and I feel like an actor on it. I feel like I am acting every day when I venture out into the world, often for my own benefit. As a result, maintaining good appearances becomes a daily performance; pretending that nothing is wrong with my body or with me, despite the fact that this is untrue. I’ve gotten so good at covering up the anguish and discomfort that tend to ruin the present.

Just recently, as soon as I woke up, I was met with a sharp, excruciating pain running down my back and into my legs. I struggled for a long time to get out of bed since my legs were so weak and painful. But when I did, after a violent spasm in my legs, they quickly gave way, resulting in a serious fall and adding numerous more injuries to my already large collection. Nevertheless, I dressed nicely, put on my best smile before leaving the house, and I gave it my all to look presentable as I exited the house.

However, I frequently wonder why I exert so much effort to keep the extent of my suffering a secret from others. How will others know to assist me and support me if I do this? And since authenticity has recently received a lot of attention, shouldn’t I want to let others see me for who I really am? Makeup is one tool that those of us with chronic illnesses use to build the façade we present to the outside world in order to conceal our sickness and its symptoms.

On my darkest days and at my weakest, I am a living testimony to how ill I have become and the terrible effects my sickness and resulting disabilities have had on my life. Only then does the performance of looking good give way, and the reality of my existence is made clear. Only during these times am I able to look at myself in the mirror and see how these conditions affect every choice I make, every breath I take, every day, and every second of my existence.

Recently, each day, each hour, and each minute has consisted of making three unsteady steps forward before having to reverse course. My breath is often taken away by the pain because it is so intense. Reaching the bathroom feels like a major victory after every step feels like a battle that requires enormous effort. It is my daily struggle and my survival!

Having to admit our doubt of the bodies that have been given to us is demoralizing. It is depressing that our lives now revolve on either succumbing to the unavoidable illness that has befallen us or falling when we are no longer able to fight. To escape the reality of our life, which is mostly governed by disease, and to feel like we can be with you, the healthy, we chronically-ill people perform and become professionals at pretending to be well. It brings a sense of normalcy to a life that so rarely feels like it for a few brief hours. In addition, we permit the appearance of health, joy, and a fleeting illusion of escape from our imprisonment.

The diagnosis that has ruined our lives has left us with a defective body that we regrettably can not return. There are no guarantees for these defective bodies, and no amount of money will be able to undo the irreparable harm that disease has done to our bodies and our lives. Our diagnosis, how we manage it, and our anxiety of what the future holds become the focal points of our lives. All of which are unsettling and burdensome to bear continuously. We therefore seize every opportunity we can to appear healthy; to put on a show and pretend to be something we are not. The anguish of what it means to live with a chronic illness can briefly vanish if we can appear healthy – as we so desperately desire to be.

Additionally, pretending to be healthy enables us to divert our attention from our diagnosis. Naturally, we can not forget because the symptoms are constantly present, but even a brief diversion from them is good. We are greater than our illness, and it serves as a reminder of that. Although it may not always seem like it, there are far more components to our lives than just the diagnosis, which frequently takes centre stage.

Consequently, even though you may see us smiling, laughing, playing, and dancing rather than lying or taking a nap, crying, or grumbling, remember that this does not indicate we are not in pain. Instead, be aware that we are residing in a delicate shell that has been painstakingly built; a façade that conceals the suffering brought on by continuing to have a chronic condition. And the more determined we are to maintain the credibility of our performance, the worse our symptoms get. When symptoms are really acute, the protective shell we have built to present ourselves as healthy is incredibly vulnerable.

Be aware that we have spent years honing our meticulously crafted façade and convincing performance that everything is well. But in reality, anguish and exhaustion have taken over our entire existence. We frequently just want to give up and give in to the sadness we’ve buried deep inside. The anguish we’ve concealed from others around us and kept a secret. We cover ourselves with masks and lies out of fear that the truth of our suffering would be revealed. We simultaneously wish we weren’t required to maintain these barriers, masks, performances, or justifications. We want for someone who will listen to our stories and experiences and assist us in removing the mask we had to put on and live behind in order to protect ourselves from stigma, condemnation, prejudice, and ignorance.

Even if our true selves are our sick selves, we wish we could authentically just be that.

Kindly share this with a friend or family member, and let’s keep the awareness going! Let’s learn, educate, and empower and, in so doing, create a society that’s more understanding, inclusive and empathetic! Thank you, and till the next post, love, and light! 💜