by Rosemarie Philip MODL, PCC
Editor’s Note: The Endometriosis Foundation of Houston has invited guest bloggers to share their work, expert opinions and thoughts with our endo community as a part of our Coffee Talk Series. These "coffee talks" cover a wide range of health topics meant to educate and inform our community. For more information, visit https://www.efhou.org/events.
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I am a burden.
This has been replayed over and over in my head. In fact, I can’t remember when I didn’t hear that voice. This one statement was at the crux of everything endo, and as I am sure you can relate, everything endo meant every aspect of my life. When a friend drove me home from the hospital from yet another surgery I thought, I am a burden. When I texted a neighbor because I couldn’t physically walk my dog for the third day in a row I thought, I am a burden. When my co-workers scrambled to cover my duties because of an extended hospitalization I thought, I am a burden. When I showed up at the doctor’s office for the third time in a month I thought, I am a burden.
This one incredibly powerful statement left me powerless. I stepped so deeply into this belief that there was no room for self-compassion. I didn’t just hate the disease ravaging my insides, I hated my body. I thought it was weak because my body was succumbing to this awful illness. I fought hard. I researched the heck out of the disease. I tried every holistic opportunity I could find to manage symptoms. I tried to make sure I went to excision specialists, only to later find that most of them also did ablation per my operative reports. I went on every “endo diet” known to man, and I would exercise through the pain and vomit because it just had to make me stronger, right? I was fighting hard to make up for where my body seemed to fail. I thought I was doing these things for me, but really… it was in spite of me.
How can self-compassion thrive in a mind, body, and heart through all of that? It didn’t.
In fact, it spiraled into other things. I am a burden meant that I had NO boundaries. I never spoke up for myself, even though I’ve spent a lifetime as an advocate for others in nearly every realm of my life. I said yes to everything, but wasn’t 100 percent in anything. I worked twice as hard, including one year at work where I outperformed all previous years despite undergoing three surgeries in seven months. I had to prove myself no matter how sick I was; I had grit. I took great pride in this grit. In fact, I was so strong and fierce I could face ANYTHING, yet in my heart I also felt everything. This created a big wall. By shutting off any sense of self-compassion, I shut out any opportunity for acceptance. I shut out those who loved me most.
“Self-compassion is key because when we’re able to be gentle with ourselves in the midst of shame, we’re more likely to reach out, connect, and experience empathy.” -Brene Brown
I know I’m not alone in these thoughts, feelings, and experiences. I’ve heard and read countless stories from so many warriors with the same themes. Why is self-compassion such a challenging thing for endo warriors? We are so good at fighting for ourselves, yet we have little compassion for ourselves… How does that even work?
Re-read the quote from Brene Brown:
“…When we’re able to be gentle with ourselves in the midst of shame...”
Shame is woven into the very fabric of everything endometriosis. Think about it for a moment. Most people still think endometriosis "is just bad pain with a period." Alert! Alert! It’s not; it’s a whole body disease, but I digress. Periods are associated with shame. Code words are even used because people are so embarrassed about it! We commonly face infertility. Shame. GI symptoms. Shame. Painful sex. Shame. Pelvic floor physical therapy. Shame. Endo belly making us look pregnant and giving us stretch marks. Shame. That’s the shame we internalize and then think about when we are shamed by others. We are often shamed by doctors we had hoped to trust, by people we love; by the woman at the grocery store touching our abdomens when we have endo belly; by social media not showing a balanced view of the disease; by medical journals and studies rating our “attractiveness” or claiming this isn’t a disease but a syndrome; and by people and organizations who prey on our community for financial gain.
Shame corrodes the very belief that we can do better, be better.
This is not an excuse for lacking self-compassion, but it is a reason. Breaking down shame and moving into a life of self-compassion (not selfishness, there’s a difference!) takes work, commitment, strength. And that my fellow warriors, I know you do have because you PROVE THAT BY EXISTING EVERY DAY.
The first step to moving out of this brutal cycle is awareness. Here are a few other tips to start your journey towards self-compassion:
Practice mindfulness. While it may help for us to be in tune with our bodies through our self-talk, we should also be cautious to not overidentify with thoughts and feelings to the point of being swept away in negativity.
Reframe. When you feel guilt for choosing self-compassion over something else, reframe! If you're wracked with pain and can’t join your friends on Zoom, use the phrase “I do not break promises to myself” instead of “I don’t want to disappoint them.”
Daily check-ins. Take a look at your day and evaluate: What was my self-talk, what decisions did I make today based on shame, when did I choose self-compassion (yay!) and why did I choose that time. You can do this through reflection, journaling, during an Epsom salt bath, as you color or during any activity that is soothing.
Partner with a therapist or coach. If needed, seek help with a licensed therapist or a credentialed coach. They are trained and have many tools to support you in this process. It is their life’s work. The investment is worth it, (not just speaking as a coach here, but as a recipient of both therapy and coaching) because I made better decisions for ME, my overall care and health when I did the work with an accountability partner. Please check out my IGTVs on the difference between therapy and coaching, and what to look for in a coach to find the right fit for you.
I still struggle at times with self-compassion; I am human. But after a whole lot of work and an incredible team of support that I slowly built as I became more open and accepting of others’ love, I now know:
I am NOT a burden.
I am a warrior fighting a disease.
I am worthy.
I am a difference maker.
Endo will not win.
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Rosemarie helps create strategies for meaningful change, facilitating breakthrough results in individuals, businesses, and mission-driven organizations. Drawing from more than 15 years of experience, she excels at leaning into crucial conversations and providing a safe environment for diverse perspectives to be valued. An advocate in the chronic illness space, Rosemarie’s most recent endeavor (#EndoWillNotWin) is building a community for individuals with endometriosis to transform their relationship with body, self and others. Utilizing her personal and professional experience, she provides tools and activities to promote sustained change and will offer small coaching circles, virtual, and in-person retreats.
As a Professional Certified Coach and Organization Development (MODL) Consultant, Rosemarie believes that this work is an art based in science; although the road often less traveled, the view from the summit is worth the climb. Just commit to discover your individual and collective best.
Rosemarie will be leading our upcoming Coffee Talk on Sept. 13 at 1 p.m. CST. Register here.
Rosemarie is also hosting a virtual retreat. More information here.