What It's Like to Experience the Isolation of Chronic Illness

Imagine being in a room – four walls, a ceiling and a floor. A barred window is on one wall. It’s just large enough to taste the outside world, yet small enough so you remain only a spectator. You notice an exit door on the opposite side. Above it, a red florescent sign glows the word healthy. You start heading towards it, but are stopped abruptly. Two wrought iron shackles encircling your ankles prevent you from leaving. You are bound to this room. Health is the only condition exiting is permissible on. Resigned, you let out a deep sigh and take a seat. This could be awhile.

No one comes in. No one leaves. It’s just you. You and time. You in this small room, serving a sentence of unknown duration. You, four walls, a ceiling and floor.

Friends, family and strangers visit. They peer through the bars of the window. Outstretching their arms, their ability to help is limited to what’s within reach. The joy in your face at seeing someone, anyone, conceals the cell that makes up your world. Only slivers of the room behind you are visible. One visitor remarks, “You were so much better when you weren’t in this room, why don’t you just leave?”

You explain your situation and discover the shortcoming of words; words can only capture so much. Never having experienced the room themselves, one’s understanding of it goes only as far as their experiences living outside of it. Some lose patience. Compassion falters because they can’t understand why you can’t just walk out the door. They ignore the shackles. The shackles that are now imbedded into your skin, from the constant pressure of trying to fight against them. You didn’t chose to be in here, but you are blamed and shamed regardless. Judgment and rejection become familiar faces in your window.

You find yourself retreating to your room for self-preservation. Your cell starts to feel darker and smaller than you remember. The window of connection and meaning gradually begins to slip farther and farther away. The level of isolation and solitary confinement you experience becomes indescribable.

This is the reality of many living with invisible chronic illness. The room is our body, and our body can often feel like our captor — one that is heavily stigmatized and misunderstood. The isolation encountered is often two-fold. There is the isolation you feel for being in a body solely inhabited by you. As a result, no one can truly understand your symptoms and experience. To confound this, those living with chronic illness are oftentimes socially isolated due to their symptoms, and lack of understanding from others.

painting of a woman by the author

Research shows isolation can be as much a risk factor for mortality as well established risk factors, like smoking and drinking alcohol. The psychological effects of solitary confinement have been documented for decades. Ironically, the loneliness you feel because of your illness could possibly be contributing to it, and decreasing your lifespan significantly. This makes raising awareness about the effects of isolation and loneliness  in chronic illness even more important. This makes staying connected to each other and sharing our experiences even more important.

The next time you visit another’s “window,” remember this. You don’t have to offer words of wisdom, or try to “fix them.” Offering your awareness and listening compassionately is more than enough. It’s the seemingly simple acts that have the most profound impacts. After all, everyone is in a room of some form or another, trying their best.

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