Nineteen in Twenty

If you do not have endometriosis (endo), you are still crucially important to driving change. 

Endometriosis can make a person feel pain. This is not the kind of pain that is fixed by some ibuprofen or a walk; it is the kind of pain that is unrelenting, crippling, and inescapable. Some people with endometriosis are given prescription pain but even with these, the pain often persists. Pain medicine might be the difference between walking and not walking, eating or not eating, passing out or remaining conscious. This pain can be, quite literally, anywhere in the body and can happen at any time during the month. This pain can have a starting point but then radiate outward, thus making a “healthy” leg feel rotten and a “healthy” spine feel like it is broken. To compound things, people with endometriosis usually endure so many tests and procedures that they feel like old laboratory animals. Oftentimes doctors have no idea what is going on, so people with endometriosis are made to feel like they themselves are crazy.

Endometriosis saps energy, causing a fatigue that is so strong that people with endo often tearfully watch their lives passing them by through a fog of disappointment because they simply cannot get out of bed or off the couch. The pain is usually constant. On days that are better than the worst days, people with endometriosis might re-enter the world around them. The pain lingers, but it is the kind that can maybe be toughed out for a little while. A person with endometriosis often does not want to burden someone else with what she is enduring, so when asked how she is doing, she answers, “I’m fine”. Perhaps this state of being is her normal and perhaps this is as good as it gets for her right now, but she is most certainly not fine. She has in front of her a road of uncertainty and struggle. She does not know if she will ever enjoy remission. She feels scared and she feels alone. She feels disappointed and frustrated that she might not be able to do or say everything she wants to do and say because she feels as though her power is being siphoned away day by day, little by little, into simply keeping her alive. A person with endometriosis represents one in ten women.

1 in 20 humans has endometriosis

This means that nine out of ten do not have endometriosis. Since ten out of ten men do not have endometriosis, we have nineteen out of twenty people who do not have endo, and one in twenty people who do have it. She has endometriosis and she hurts, and she is discouraged beyond words. She will fight for herself as much as she can, but she needs you to fight for her also.

If you are a person who does not have endometriosis, please fight for someone who does. This is a condition that needs to be widely acknowledged and understood before we will likely ever see real progress in diagnosis and treatment, but the condition itself limits what many people with endo are capable of doing. There is a vicious cycle going on where the silence needs to end but the condition itself promotes silence. It can be hard to be loud, go to advocacy walks, and fight for what is right when a person can hardly move on some days and she is being told she is crazy. The only way to break out of this is for people with endo to fight the best that they can and for people without endo to join with them. If you do not have endo, please help us in our unified effort to raise endometriosis awareness and to support informed decisions.

How do you support endo awareness and advocacy? Let us know in the comments below.