They don’t get it. No matter how many times and how many ways you explain what you feel, your lover, spouse, family, friends and acquaintances don’t get it. They never will get it because your condition is your lived experience not theirs. They can empathize. They might sympathize. But they can’t know your physical and emotional experience of disease.

Think about this please. If I told you something tasted like chocolate but you never tasted chocolate, how would you know what I was talking about? If I told you something smelled like roses but you never smelled a rose before, how would you know what I was talking about? You would only understand if you had the experience of tasting chocolate or smelling a rose. It is the same with disease.

Why do we keep trying? When we try to make others understand our experience we are often trying to make sense out of our situation. We are trying to validate our experience. We want others to know that it’s hard living in our bodies. Over time, our attempts to make others ‘get it’ chip away at our relationships. The disease dominates every conversation. More and more we see the world through the lens of disease. The elusive understanding that we so desperately seek escapes as we drive people away by our litany of symptoms and complaints.

Only when we become aware of what we are doing can we take steps to change. Accept that others may never ‘get it’ when it comes to your health. Once you have explained your condition, move on. Find other things to talk about. Find other things to think about. You are not your disease.
How much room do I give disease in my life and relationships?

(c) Linda Ruescher excerpt from Life Recycled: Creating a New Normal in the Face of Chronic Illness available on April 1, 2018