Talking About My Illness Does Not Mean It Defines Me
Candidly sharing thoughts and feelings about the realities of living with chronic illness and chronic pain does not equate to forming an entire identity around the illness.
I think there’s this strange idea some have, that if someone is speaking openly, honestly, about the impact of chronic illness on their life, it must mean the person is defining themselves as their illness. I believe this perception is harmful. I think it’s partly why some people aren’t comfortable talking about their reality to others. They don’t feel safe.
You can often wind up having to defend yourself. Being compelled to prove you aren’t moping, feeling sorry for yourself or losing who you are to your “negative” illness thoughts. You become subtly attacked by these words… “You’re letting your illness become your identity.”
But here’s the thing – people are magnificent beings. We can speak about one topic, share our feelings, be truthful about the physical and emotional pain and still have an endless amount of other facets to who we are as a whole.
Being real, opening up about some of the realities of living with chronic pain or illness doesn’t automatically mean that that is all the person feels or thinks about during every second of every day.
There are times during this journey when people can become understandably overwhelmed, depressed and feel despair. Usually during moments when health issues are impacting their lives severely. That still doesn’t mean they’ve now allowed illness to become the entirety of who they are.
Chronic illness is a chapter in our enormous book of life. It’s important to the entire story, but it isn’t the plot. Just because that chapter only deals with the one topic doesn’t mean the rest of the book has been deleted. If the chapter is a really long one, that’s because it’s playing a significant role in the character development.
I think it’s time to stop shaming people by accusing them of being completely defined by their illness simply because they have risked being vulnerable, have risked speaking about it openly.
Just like a book, if you only read that one chapter, you have missed the entire adventure. Look deeper and you will see that you’ve only skimmed the surface.
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Thinkstock photo via JZhuk.
Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies. Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life. Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer. She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver. She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.
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