Hate From Within Your Tribe
By: Autumn Smith
Last month when I first woke up from surgery, I was told something I had never heard before. I was, at that moment (and if even for JUST that moment) free of disease. Does this sound familiar yet? My doctor had removed everything. Well, except maybe tiny microscopic pieces invisible to the human eye. Of course, it can return. "It can return" is something I've thought about having tattooed to the back of my hand so I never forget, but at that moment, I was at peace knowing that my organs weren't being eaten alive by my horrific disease. After joyously letting everyone know how much disease was NOT in my body for two weeks after surgery, Lenny Letter popped into my inbox and Lena Dunham revealed the same exciting news. Like many times before with many different women, I felt so in tune with Endo Sister Lena. Apparently even the scummiest of gossip news sites were just as happy for her as I was, "LENA FREE OF DISEASE!" they exclaimed in their headlines. Well, that wasn't necessarily completely accurate, I could tell they thought she was forever in remission by the way they worded it, and that can be problematic. I summed it up to the media so obviously not giving a shit about my disease, and moved on. Until, that is, that I started scrolling through social media. My favorite endometriosis-themed accounts were so upset by these headlines, some of them had completely written her off as an advocate.
"She should have at least made sure the article was written properly," wrote one women who maybe didn't read her original writing (and most definitely didn't realize that if a celebrity had that power over something like the Daily Mail, the phrase "leaked sex tapes" wouldn't exist). I can understand the confusion on the technicalities, but some comments were a little more hurtful.
"LOL. I give it a year."
That exact comment knocked the wind out of me, possibly worse than any pain my diaphragm had from my disease over the last few years. Were these women thinking the same things about me?
When I first decided that I was going to have a full hysterectomy along with another excision surgery, I couldn't wait to tell my fellow Sisters via the beautiful interwebz. These women have followed me almost every step of the way in my disease and flooded my inbox with supportive messages for things as simple as me trying to have a healthy bowel movement after a week of constipation. Because of this, first and foremost I need to get out of the way that I couldn't have done it without them. Truly. It takes a lot of courage to comment on a strangers life, and especially so when you're opening your heart to them. Although, in this particular situation, I quickly learned I needed to proceed with caution.
Let me rewind and give you a tiny timeline of my feelings being hurt by my peers regarding this disease. A few years ago, we had a breakthrough in the endometriosis community when an informative and touching documentary called 'Endo What' finally came out about our disease, and a very truthful quote had resonated with women and started making its rounds on social media. "Endometriosis shouldn't be the path of 15 surgeries. It should be one surgery done right." said Iris Orbuch, MD. It didn't take long for it to feel like women were using that very quote against me. After posting something on my account about my path of ten surgeries, I had a woman comment and ask me for some advice about her own upcoming surgery. Before I even had a chance to answer, someone had replied directly to her letting her know that you shouldn't have ten surgeries [like me], you should only have one done right, and she needed to find an excision specialist. Ouch. She clearly didn't think I knew that, or she wouldn't have jumped in for intervention. She didn't offer her advice to me, she told someone in front of me that my path was in fact incorrect. This exact situation repeated a number of times. When talking about my experience with Lupron, I had women advising my followers to not do what I did and end up being on it for two years. "No one should ever use it for more than a year!" a friend said to someone else, not to me, on my personal account. With my hysterectomy, it was worse. I had quite literally put all of my eggs in one basket, and was having them removed along with my reproductive organs to finally have a shot at a new life. Upon announcing it, I had numerous women open up to me about making the same decision. Once again, before I could answer, a flood of women letting them know that hysterectomies don't cure endometriosis came in. "It won't cure you, it can always come back!" not said to me of course, but right in front of my face. I was looking around the virtual playground and hearing virtual whispers about myself everywhere. Was I doing something wrong? Should I stop trying to help people?
Of course, like each and every one of you, I know what I'm doing. If you don't know what you're doing right now, you will know exactly what you're doing in a matter of days because like the rest of us, you will spend many sleepless nights asking for advice and doing more research than the doctors who will be treating you. I know that you should only have to have one excision surgery. I spent $20,000 on one two years ago, and guess what? It didn't work. I had to have eight laparoscopies with laser in between, because I couldn't have even come close to affording more than the two excision surgeries I had, and I also could barely move from the pain and needed something, anything [if you will]. I also know that I shouldn't have been on Lupron that long. I had given up at that point in my life and I was willing to try anything. More than anything on this fucking Earth of ours, I know that a hysterectomy isn't a cure for my disease. That fact alone keeps me up at night and makes me question my existence. Still, you better believe I'm going to try it after years of living like a ghost, only fueled by medications and unsuccessful surgeries. I had a great plan with my doctor for my surgery last month, and I choose to have hope.
If I'm going to be an advocate and try to help other women, maybe I shouldn't as much talk about my personal experiences, and maybe I should just stick to the facts. It's hard to believe that though, as I know in my heart that my followers and the people I follow in this shit-filled journey care about me, my thoughts, my well being, and my hope for the future. Specialists are great, but what's helped me the most are the personal, raw stories of my peers. In our advocates, do we want the perfect display of cold hard facts and flawless teachings or do we want a real human we can relate to? Re-enter Lena Dunham.
I don't know if it's the menopause, but I am already mind numbingly bored of talking about her at this point in my writing. I just want to let her live. If anything, I want to find out her publicist's address and send her edible arrangements along with an array of balloons that spell out, "THE DISEASE IS GONE!" None of us will ever forget that it will most likely come back (if it's even really gone) so we deserve to have our moment.
As far as an advocate goes, I will truly take anything at this point. I have the same ideas of the perfect celebrity advocate as you do; someone with a shocking amount of knowledge about the disease, someone who never misspeaks about it and gets their point across at every event they step into, someone who will never stop fighting for us, even when they themselves are physically and emotionally tired. I want to do anything and everything for us, but even just reading that description is exhausting. Not only can I not imagine the pressure she must feel, but please take a moment to imagine the hurt she might have experienced from this backlash. Healing from surgery, excited, and quickly shut down by hundreds of women in the same position she was in. I don't want to have my feelings hurt by women I admire, and she probably doesn't want it either.
I feel the same frustration as you do every single day, I just refuse to believe that she holds the key to world wide awareness. Our strong voices have gotten us so far in the past ten years, sometimes I can't even believe how much has been accomplished. We're so far from the finish line, but I know we'll get there. More than anything, I hope that we can stick together the entire way. Let's not only support each other when we have painful poops and rough days stuck to our heating pads, but let's support each other with every decision we make. This community is stronger than anything I've ever been a part of. We know how many wonderful women we can ask for help, and we should also know to trust these women when they make life changing decisions and hopeful announcements.
Blah, blah, blah. Okay, the menopause is most definitely making it hard to give a shit about anything at this point. I just want us to be nicer to one another. At the risk of sounding like I might be crying from a hormone imbalance, can't we all just get along?