My Cancer Hypothesis

(Disclaimer: The following is not meant to make light of anyone's hardships or trivialize cancer in any way.  My only desire is to try to explain endometriosis using a well-known disease).

CANCER.  
That is a word that strikes fear in most people, no matter who they are.

ENDOMETRIOSIS.
This is a word that strikes fear in pretty much no one.

Both involve the growing of cells outside the region of the body in which they should be growing.  Both cause pain.  Both can cause a significant decrease in quality of life.  Both can grow anywhere in the body.  Both can cause problems in the body outside of the area where they originated.  Both have a wide range of severity and prognoses.  Both have no known cure.

I have spent years trying desperately to get the people in my life to understand what I am going through.  I've made inroads, but it is a slow process.  For some reason, the fact that endometriosis stems from the uterus seems to trivialize it to some people and make others uncomfortable.  But if I were to tell someone I had cancer, I believe that I would immediately receive sympathy, understanding and offers of help.  If I had cancer, people would have a reference from which to talk about my disease.  They would ask about treatment and oncologists and pain management or even possibly surgery.
I do not want cancer.  Please understand I am not wishing I had cancer.  I am not wishing cancer upon ANYONE.  It is a horrible disease and loved ones of mine have had it.  It still scares me to hear about anyone having it.  But what I have gone through and continue to go through is not unlike some cancer survivors.  Obviously there is a spectrum to cancer, as there is to endometriosis and some cancer patients are much worse off than I hope to ever be.  But I can't say I haven't thought occasionally that it wouldn't be so bad to have radiation, deal with the side effects, take treatment meds for a couple years and hopefully get back to my life.  And yes, I know it is insane for me to be jealous of someone with cancer.  It's crazy.  But I picture people's reactions were I to tell them I had cancer... and their understanding and compassion... and I am jealous of those reactions. I have good days and bad days.  If you see me on a good day, that doesn't mean that the next day will be good too.  Or if I try to act normal when I meet a friend at dinner, that doesn't mean that I am not uncomfortable or struggling at that very moment.  It just means that I choose to enjoy the moment and not dwell on all the bad moments that I now know are inevitable.  Sometimes I feel like I am stuck in a time loop... every time I go to a new gathering or new group event, I have to remind people that I am not okay just because I show up.  Somehow I have not been able to really translate to others what I am going through and that is beyond frustrating.

 Nobody would accuse a cancer patient of not really being sick.  Nobody would tell someone with a tumor that the pain was all in their head.  Nobody would tell someone who had just undergone radiation that maybe if they could just walk it off.  I have experienced all of those reactions.  It just seems a bit unfair.  

Reading the blogs of other women with endometriosis has really made this clear to me. I am hyper rational.  I wonder if because of that, it makes it harder to convey what I am going through.  Reading some of those other blogs feels like they are talking about me or living my life but I just would never describe things the way they do.  I tend not to make a big deal of not feeling good.  I don't intend to be stoic, I just process things internally.  Reading other women's accounts sometimes lets me see the emotion that I try not to dwell on.  Some of it is my personality and some of it is a coping mechanism.  But they all remind me that endometriosis is a terrible disease.  It can cause incredible pain, infertility, inability to have sexual intercourse, lead to pelvic floor dysfunction, IBS and post-surgical complications.  And still it is so unheard of for the majority of the population.  I sometimes wish I could tell my family I was suffering from cancer... just to see the look of recognition and understanding on their faces.  So maybe that is something to think about if you know someone with endometriosis... it may be an unknown disease, but perhaps you could think of it within the framework of a disease that IS known and be able to understand what that person is going through.