Endometriosis. What is this word? The technical definition of this medical condition is a disease in which tissue that normally grows inside the uterus grows outside the uterus. It is estimated that 1 in 10 women and girls worldwide are living with this disease.
Lately I’ve been fascinated with what lies within the label of the word endometriosis. As I continue to interact with women and the endometriosis community, my conversations about the experience of the disease is vastly different than the conversation I ever had about treating the disease.
Generally, treatment seems to consist of a fairly small list of tools. In stark contrast, however, the way women experience endometriosis couldn’t be more different than each of us EndoSisters are unique.
What I find to be missing with treatment is acknowledgement and support around how pain, disease, and infertility hurt us emotionally and spiritually.
My point is first, that with this disease, or any disease, as in life, even though we may have a word (endometriosis) in common, our actual perception of the experience is totally different. And second, that “it” (endometriosis or whatever) is just a word. For me, the experience of endometriosis never resolved around the fact that the lining of my uterus grew in unusual places. All I wanted was for severe chronic pain to go away.
Treating the disease for me took several surgeries, hormone treatments, and pain medication. But treating the disease and eliminating evidence of disease never brought wellness. Wellness and true healing came when I shifted focus inward. Finding unconditional love for myself and my experience (including everything I hated) began the process of healing my spirit and mind. When I got out of the box labeled endometriosis, I allowed myself to do what’s best for me. I stopped feeling obligated and solely focused on doing what I was “supposed to do” and began searching outside the box as well.
What I know is no one’s experience is the same. No one mentally or emotionally relates to the disease in the same way, and it is time we are treated as a whole person, not a word.