Trapped in Pain: The Misconception of "Free Time" with a Chronic Illness

Staying home with chronic health issues much like lupus, POTS, endometriosis, and much more, is often perceived as a stroke of luck, a chance to rest or enjoy the comforts of home. But such a view overlooks the deep, complex reality that those with chronic conditions face. For someone with lupus or any debilitating illness, staying home isn’t a choice steeped in luxury.... it is a necessity dictated by a body in constant rebellion. What seems like a life of ease from the outside is, in fact, a cycle of pain, isolation, and emotional distress.

Lupus is an unpredictable and unforgiving disease that strikes with fatigue, pain, and inflammation, often leaving its sufferers debilitated for days, weeks, or even months. Staying home under these circumstances isn’t restful... it is a battleground. The body's immune system mistakenly attacks its own tissues, and the mental toll of feeling trapped within the walls of your home, day after day, exacerbates an already fragile state of mind. The world shrinks, with dreams, ambitions, and simple pleasures giving way to doctors' appointments, medication schedules, and uncertainty.

The "free time" that comes with being homebound is not filled with carefree moments. Instead, it is spent managing pain, fighting off fatigue, or feeling the weight of isolation. Social gatherings, work functions, and even simple outings become monumental tasks. Loved ones might fail to see the silent battle, thinking that time spent at home equates to relaxation or indulgence, unaware of the inner turmoil, frustration, and longing for normalcy.

In truth, there is no happiness in being forced into a life of retreat. While it may appear that there are "free days" with endless time, those who suffer from chronic illness often grapple with a profound sense of loss... the loss of who they once were, the loss of mobility, of freedom, of connection. It's not a gift; it's a circumstance forced upon them, with no escape or alternative. The days blur into one another, marked not by achievement or satisfaction but by survival.

In essence, staying home with chronic illness is not a fortunate or leisurely existence... it is a life spent managing symptoms, seeking relief, and yearning for the simple freedoms others often take for granted.

-aubs

08-29-24