Personally one of the hardest parts of dealing with endometriosis has been getting people to understand the sheer misery I went through monthly. I have always struggled with painful periods and can’t even begin to count the number of times a doctor said, “It’s normal. It’s just part of being a woman and unfortunately you have it worse than others.” (The main reason I am so thankful for finding my current OB-GYN is that he was actually the first doctor to ever actually listen to me. My life has changed drastically in the past year thanks to his patience and dedication to helping me.) Let me just say, the pain I felt was not normal and never will be. Not only was it abnormal, it was terrifying and lonely. No one understood what I was going through and they all told me on countless occasions to stop being dramatic. So as I battled this silent disease I was starting to slowly resent those closest for me for not understanding.
Every single month I would be minutes away from a panic attack knowing the hell I was in for. That is not normal.
Sometimes late at night when the pain was so bad and I could barely stop myself from screaming, I would sit in the shower and sob. I would cry so hard that I would wake my husband asleep in the next room. “Are you ok?” he would ask and I would squeak out a yes and then be embarrassed I had been caught. That is not normal.
I missed work, school, important dinners, and even a trip because I was so crippled in pain. That is not normal.
Yet somehow this extreme pain and isolation didn’t show others how much I must was suffering rather made them label me as weak and led to such comments as “just suck it up,” or “you’re being a baby, it can’t be that bad.” I still find those comments humorous because many days getting out of bed was “sucking it up.” Looking back I realized – suffering was defining me as a woman.
I have spent considerable time searching endometriosis online and saw this video of Susan Sarandon speaking about her experience with endometriosis. I found much of what she discussed in the clip interesting – she challenged people to pay attention to your loved ones and trust them. When no one will listen, be their advocate and tell them to research more or see a new doctor. Simply… listen so you can help them more.
While my dearest husband has always been supportive, he has little patience with people being “sick all the time.” We have struggled getting on the same page on what I am going through. Sometimes I feel as if he forgets that endo is a chronic pain disease and no matter what I do or try, I will always deal with this.
Now thanks to a wonderful acupuncturist and the community at her practice, an amazing therapist, a very patient close friend, and fantastic infertility support group I have realized that I have countless people through my journey. I finally have my people to listen. And these people, some even strangers, have helped me become so much more aware of how I can help others. If I ever hear or see someone suffer the way I do, I will do everything in my power to help them. I will listen without judgment and will provide them with every fragment of information I can. And when someone blows them off, I will be the first person in line to charge the office door. And I will help them because I know they are not “sensitive” or “overly dramatic,” rather are dealing with a disease that is much bigger than simply sucking it up.