Recently a friend explained how my illness was the reason behind some of my life choices. They had gotten it completely wrong and that’s OK — after all, no one else lives inside my head besides me. What surprised me was how this person had decided that a chronic illness defined aspects of my life that were completely untouched by it. I thought that my endometriosis had no place in the discussion. But the disease was my friend’s first thought. It made me wonder whether endometriosis had become a label under which others filed most of my actions. 

I knew the comment was made without malice but it revealed how that person saw me. I felt that they failed to recognize my choices and viewed my lifetime companion, endometriosis, as a deciding factor in my preferences.

It’s true that endometriosis is with us every day. Flare-ups can occur at any time with some of us experiencing weeks-long bleeding. Many of us are limited in our ability to hold down a job and pursue a fulfilling career. Endometriosis is why many women undergo in vitro fertilization. But despite all of these things, we are more than our illness. Our lives are about supermarket trips, dog walks, getting a driver’s license, renewing our passports, taking the kids to school, and so on.

We are more than this disease.

How can we remind others of this, especially when we need to conserve our energy for getting on with life?

The problem with using a person’s illness as a reason for their behavior is that it becomes a lazy label. It’s like placing a sticker that reads, “Oh, yes, that’s because they’re sick” onto everything we do or say. These sort of statements misidentify a person’s motivations and reduce their entire existence to one common denominator: their illness. 

I tend to forget I have endometriosis just like others can forget about the scary bills they have to pay or the scoliosis that may give them trouble in the future. Our life is more than this illness. In spite of the flare-ups and swollen tummies, we are in control.

We need to remind ourselves of this or risk becoming consumed by something outside of our control.

When dealing with one medical appointment after another, it can be hard to remember that our lives are so much more than our chronic illness. We have parties to attend, birthdays of loved ones to celebrate, opportunities to travel, countless reasons to enjoy life without thinking, “I have endometriosis.”

I immediately corrected my friend. I explained how my illness had nothing to do with the particular life decisions we were discussing; that my choices were down to other reasons. I stated calmly that my illness had no place in our conversation. Then I realized that only someone with endometriosis can understand how much of their life is affected by the disease.

It doesn’t matter how anyone else sees us. To some, we are heroes; to others, drama queens; to a few, insufferable weirdos. We know that endometriosis does not define our personalities and it’s not the reason behind every important decision we make. There is life beyond this illness even when the old hag doesn’t want to leave. Once we are clear about that we’ve already won half the battle.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.