I believe there is a gap between how the medical community treats endometriosis and how patients experience the disease.
What does this even mean? And what can I do about it?
There is a lot of work and research being done to help women with endometriosis deal with pain, hormone imbalance, and eliminate endometriosis tissue. Which is fantastic, and very much necessary. When we are first being diagnosed with the disease, I understand, eliminating the above ailments is the cornerstone of our experience and motivation. But as time goes on our inner thoughts transition from “make the pain go away, make the pain go away, when is the pain going to go away” to something like this… “I missed work again. When will I be able to get off the sofa? I’m sick of laying in bed. I wish I felt like playing with my son. Am I really in pain again? How long has it been since I wasn’t in pain? Why don’t my friends call to hang out anymore? My husband asked for sex again and I cannot even think about it. How many pain pills did I take? Did my daughter eat cookies for dinner? UGH, mom fail…”
Any of these sound familiar? Can you see how pain and struggle with chronic disease transitions from acute pain, to pain with a side of emotional stress? This is where I come in.
What I have found, not only in my own journey to wellness, but also in speaking with numerous EndoSisters is that yes, the disease is painful which by itself is hard to deal with. Then add in the chronic nature of endometriosis with extreme exhaustion over long periods of time, and mental and emotional stresses begin to take a toll as well. The “I’m not good enough” guilt and disappointment gremlin starts to speak up… I’m not a good enough wife, friend, sister, mother…etc. And it SUCKS! Who invited this little gremlin monster into my life? GAH!
Repeatedly bailing on friend’s invitations isn’t fun. Missing your son’s soccer game again builds guilt. And being your husband’s non-existent lover piles on incredible shame.
Are any of these painfully emotional topics talked about with your OB/GYN? From what I am hearing (and experienced)…not exactly. Do I believe it is your Endometriosis Specialists’ place to address all of this in one epic appointment? Not exactly. The medical community tends to focus on the functionality of the disease. And that is great! We need it!
However, what do we do when frantic, overwhelming feelings of guilt, failure, shame, and anger take over? Here is what I do know. The day I became my own advocate by listening to my body and confidently speaking my needs is the day I began my path to wellness. I also know that when I was in my deepest, darkest hole of endometriosis hopelessness, the above statement would have sounded intellectually wonderful, but so far away from my reality that I couldn’t even begin to relate.
How did I step from hopelessness to advocating for my own wellbeing? Baby steps. Instead of tackling the GIANT MONSTER of endometriosis, I patiently and repeatedly addressed “low-hanging fruit” stresses in my life and questioned how to eliminate it and let it go. I took on the easiest issue in front of me. Some days that looked like remembering what inspires me. Other days it looked like journaling to discover why I felt irritated or stuck. And yet other day it looked like simply showing up. Instead of frantically wishing for the day when endometriosis was gone, I focused on BEING the person I wanted to be. When my current state of being was a lump on the sofa…inviting my friend over for dinner meant BEING a friend. Even if I was still un-showered, in my PJs, and we just ordered pizza. We still watched the Bachelor and got to hang out. It may not be perfect, but it was connecting, and I got to feel like a person again.
If you are craving change, feeling stuck, and wondering what to do about it, you’re in the right place. This month I am featuring 5 fabulous EndoSisters who have found their voice, their power, and their path to wellness. A series I am calling “End with Empowerment” to celebrate the end of Endometriosis Awareness Month. Next month kicks off with a webinar to discover where you might be stuck and what to do about it.