You know…the I’m Fine Mask that helps us get through everyday life. Living with chronic pain and disease isn’t easy. Having to put on a “happy face” and go out into the world is how many of us EndoSisters get through the day. I know it’s how I did. But, I often wonder if mine was actually helpful.
For me, if I could be just like everyone else, then I won’t be “sick”. I was diagnosed with endometriosis at age 14, and I wanted nothing more than to be a normal teenager. Having some activity or project to put my energy into was an escape. A break from the reality of painful menstrual cycles and exhausting back pain. Looking back it all makes sense. All I wanted was for the pain to go away. Clinging to anything to help me forget seemed logical. It was my way to hide from the dark reality of endometriosis, and survival mentality at its best.
I grew up a competitive gymnast, so the idea of pouring all my energy into a single focus came naturally. After gymnastics my focus became high school sports. I ran track and played softball. I was a diver on the swim team first, and then transitioned into a swimmer. And, I joined the dance team. Athletics was a great diversion. If I could be a good athlete even with all the pain, it was like earning an extra gold star. Keeping my mind and body busy helped me forget. Pushing myself physically not only proved I was fine, it helped me FEEL. It’s true, exercise produces endorphins that improve mental and physical health, but for me, it was the rush of competition and testing my physical limits that pushed endometriosis symptoms to the back of my mind.
Long ago I separated my health from the rest of my life. The longer the disease went on, the more separate the two became, until I literally thought the two had nothing to do with each other. I spent almost two decades surviving pain, and surviving in society. I got really good at putting on a pretty face, a mask, and hiding my true feelings. I didn’t want anyone to be able to tell I wasn’t feeling well. I didn’t care if anyone intellectually knew I had an illness, but I did care if you could physically see that I felt sick. I mastered the art of pretending everything was fine. I sacrificed my personal energy to fit in. I used every ounce of my being to hide how I felt from others, and myself.
I developed an ability to rationalize and compartmentalize the disease as a separate part of my life. It was a successful strategy through high school, college, my career as a commercial interior designer, and my photography business. I would work my ass off, flooding my energy into athletics or projects, and then come home and crash. Being the best I could be at whatever I set my mind to defined me as a person. But in reality, it was covering up a disease that was slowly eating away at me physically and psychologically.
This need to overachieve and drain myself physically finally caught up with me. In early 2008 I started training for several long distance road bike rides, with my major ride coming in July 2009. I spent that year and a half in spin classes and the road, piling on 100-200 miles a week at the peak of training. One of the most difficult amateur bike rides in Colorado is called the Triple ByPass. It is a one day 120 mile ride climbing over three of our mountain passes totaling10,000ft of elevation gain. Crazy? Yes. And the miles were the easy part. The last four hours we endured rain, hail, and cold temperatures prompted doubt that the day would never end. My sub-120lb body was frozen to the core. I spent the whole day climbing an endless102 miles of mountain road, psychologically yearning for the glorious 18 mile downhill cruise to the finish line.
I couldn’t feel my feet, I couldn’t feel my fingers, and I could barely see as the rain pelted my face. My body shook to keep warm. At one point a bunch of riders collected under a bridge to do push-ups to warm our muscles. I was crying. It was miserable. I spent 102 miles dreaming of the 18 mile downhill, and now, all I wanted to do was go back up hill.
The next day we drove back to Denver and hung my bike up in the garage where it stayed for a long time. I rode a few times in the following year, but nothing significant. Riding my bike no longer fulfilled me the way it used to. In the time between signing up for the Triple ByPass, and riding it, my perspective was changing. (Read about the day I chose to stop taking pain pills) By the time the TripleByPass was over, I was beginning to see the obsessive pattern.
My acupuncturist tells me it took her 6 months to get my body and qi energy recovered from that day. I did it because when I was on the bike I couldn’t feel the endometriosis pain. It took every ounce of energy to ride up the mountain, and I didn’t care. I couldn’t feel endometriosis pain. I was obsessed with riding, it is all I could think about. It covered up my pain, and ruined my body at the same time. I now understand it makes no sense, that is was not healthy. But back then, I would do anything to make the pain go away, even if that meant enduring a different type of pain and exhaustion.
I used to separate my health from the rest of my life. I disconnected and compartmentalized, and on some level, it seemed to work. However, I was only fooling myself.
I spent years tying to be normal and forget that I had to deal with a chronic illness. Although the pattern to overachieve seemed to accomplish a short term goal to “make the pain go away” it also drove a wedge between my head and my heart. The longer time went on, the disconnection grew so large that I had completely lost myself. I lost myself trying to meet others’ expectations. I was lost and I was ashamed.
***disclaimer*** Every woman is different, and every woman’s story and journey with endometriosis is different. This is my story, my endometriosis mask, and my way of pretending I was fine. It was my coping mechanism and way to deal with almost 2 decades of chronic pain and disease. Some women may identify with my story, and some may not. I do not know what life looks like for you, or how endometriosis affects you. I continue to share my story in hopes that it may inspire women, and help women know they are not alone. xoxo ***
Have you ever been there? Tired of pretending you’re fine? That’s where I come in. When living and dealing with endometriosis is overwhelming or you feel like there has got to be another way…that’s where I come in. There is no 5 step guide. Every woman’s endometriosis journey is different, and that is what makes the disease so difficult. I don’t have the answers, just a lot of questions. And somewhere along the way, we discover you. We discover you. As you begin to listen to your body, we then build a team of professionals to help you heal YOUR endometriosis.
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Very true. The mask we put on to present to people that we are fine. Then we stop and wonder why people do not have more compassion for us sufferers. I think that through the generations there has to be a shift. Thinking about this more, I recall that probably most of us were told “period pain” is normal. So I think we were almost taught this as a unconscious belief, that we were okay and to appear okay, when the reality is, we are not okay with the pain and suffering from Endo. Hopefully we can shift our younger generations out of that mentality. Thank you for your honesty and your blog. It is much appreciated!
Thanks Michelle! I fully believe in shifting our mentality…in shifting THIS generations mentality. Changing the way women deal with and relate to the emotions of living with endometriosis is getting women unstuck and moving in a positive direction. It has been so fun to watch the shift happen right in front of me! xoxo