I said one time, "Your ignorance may be bliss, but it isn't to the people that have to put up with it", and I think it fits this post.
There is always at least one person that does not understand, or empathize, with what you go through while living with endo.
I spoke with some of my family about what may be coming up, to treat my adenomyosis and endometriosis. My husband and I are considering a hysterectomy because my quality of life is so poor. I wanted to let my family know so that when the time comes, IF we need help, they are expecting it. One of the family members asked why we would need help and said that my Dr must not know what he is doing because I am still so ill. She was at the hospital when I had my surgery (in April) and said that when the doctor came out, he said that he had gotten all of the endo. I tried to explain to her what he said. When we spoke with him, he told me that he thought he had gotten it all, but due to me being among the worst he had seen, he couldn't be certain. I had a large amount of adhesions (postop report said anatomy was unrecognizable), had an advance stage IV endo, and adeno. He told us that he took out all the endo he could see, but couldn't guarantee he got it all because of everything that he found when he got in there. He said that he could have missed some on the back side of my uterus. I explained and she dismissed me. Then she proceeded to tell me that when my mother in law had her hysterectomy (mind you she didn't have endo or adhesions), that she was up and doing stuff the very next day. My mother in law corrected her and told her that she wasn't up and around for 2 weeks. She also told her that she was supposed to take it easy for 3 mo, but because she had 5 children to take care of, one that had CF, she did a lot that she wasn't supposed to do. I was appreciative that my mother in law spoke up, but it didn't deter my other family member from dismissing me.
The reason I am sharing is because I woke up this morning thinking about it. The thoughts of hurt, disbelief, and disappointment would not leave my head. I understand that everyone has their own lives and it is not always understood what another person is going through. The thing I don't understand is why another woman could not be more sensitive to the fact that I am having a major surgery that may make me dependent on others for a little while. It is also going to take away my dreams of having a child. When she said, "They only make 3 incisions, it's not like they cut you open anymore" it cut like a knife in more ways than one. She was rather sarcastic in her remarks with no regard for my feelings or the fact that I am scared.
Those people that are ignorant or just don't care about you enough to lend an ear or helping hand, are in each of our lives. As long as we have atleast one person that is supportive and understanding, then we can let the others live in their ignorant bliss. After talking to my husband about it, we came to the conclusion that she may not know how to handle it all. Not everyone can handle having an ill person in their life or being the shoulder to cry on. Not everyone can be selfless when someone else needs them to be. No one is perfect, we all have our flaws. My husband and I will figure it all out, and will be stronger because of it.
We trust my doctor and know that he does the very best that he can to help. We know that there is no cure and that there are no guarantees that I will ever be pain/complication free.
I am reminded of the golden rule, "Do unto others as you would have them do unto you." I sometimes wish that I could treat people the way they treat me. No, I really don't. I see myself as better than that. Though I know that I can't make myself hurt worse in order to do for those that can't make any sacrifice to help my husband and I when we need it. Putting myself through excruciating pain is a huge sacrifice that I have made in order to help everyone that I care about. If the sacrifice is made in vain, then it is not worth it. If it is not appreciated then it will not be sacrificed again.
I no longer feel the need to plead for understanding or help because I am a strong woman. I have made it through a lot of things all by myself. Now I am blessed with a loving and supportive husband that will hold my hand through it all. He will pick me up when I fall, and protect me from everything that I can't fight.
It hurts when you lose respect for a loved one because you figure out your love for them is stronger than their love for you. It hurts that I doubted myself, because I put so much stock in how she feels and what she thinks of me. It hurts that she looks at me as someone who should just get over it. It really hurts that she can't understand that I wanted to have a child and that I may need help coping with the loss after the surgery.
It will hurt for a while but we can only do so much to get understanding and support. We can't force someone to learn/do something they don't care to know/do. We can just hope that they come around someday. If they don't, then they are the ones missing out. Knowledge is power and love is long lasting. My loyalty is unwavering and I will always be there when needed. We can't let everyone else make us bitter, because then they get the best part of who we are. Hard to walk away, but sometimes can be healthier in the long run.
I hope this is helpful to someone out there who is going through a similar situation. We are Endo Sisters and we share a bond, over a 176 million strong. You are all a part of my support and I am a part of yours. Family and friends may not always comprehend, but our Endo Sisters always do. 💛
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