I was sitting at the table today explaining what the doctor found at my last appointment and the treatment options that were offered. I then had to explain that even though we chose an option that will treat an issue, it won't solve the other complications. The look on my family members face was perplexed. She asked why this wasn't treated like they treat cancer. I didn't have a good answer other than to say it wasn't cancer. She then asked why I couldn't get disability, especially since she has watched my health fade for a few years now. Again, I had no good answer. (My husband and I proceeded to tell her about the March for Endo and what they are trying to get accomplished). She asked some very good questions but she also asked questions that weren't possible. One the questions was why can't they get all the hormones out of your body to starve the Endo? That didn't make sense to me. I understand why she would think that, seeing that I explained that the Endo is progesterone and estrogen, but how can you strip every cell in the human body of those hormones? (That question reminded me of my days working in the ICU. We would have a person that was badly injured and would be brain dead or severely brain damaged and a family member would ask if they could have a brain transplant. Yes you read that right, a brain transplant. I understand where they were coming from. They were losing someone they loved and wanted to find any answers they could to hold onto them. It is still one of those questions that is absolutely impossible.) She has watched me suffer and decline and she is grasping at straws to try and figure out a way to help me and I love her for it.
After explaining everything and going round and round, we decided that it was time to get off such a dreary subject and join everyone else in more delightful topics.
I came home and on my Facebook wall there was a friend asking how to explain Endo and the fact that she is having a complete hysterectomy to her father. She was unsure how to explain it all to him. I put in my two cents and told her that all she could really do was explain it to him the way the doctor explained it to her. Tell him what you understand endometriosis to be. Then explain to him the treatment options you were given and the pros and cons of each option. The next step would be to tell him which option you chose and why you think that option is the best one for you. The last step is to ask if he has any questions or concerns. All you can do is answer them to the best of your ability and seek answers that you don't know, by calling your Endo specialist and asking. I told her that I was unsure if that was helpful, but that is the best that I could come up with.
I understand where she is coming from. It is hard to talk to loved ones about this illness. It is hard to tell them that you made a decision to do something that may make you life better, but there is no guarantee. For me it is hard to tell someone that I have chosen to have a hysterectomy but I am struggling with the decision because I have no children, and I am afraid that I won't get the relief that I need. It is hard to explain that you trust your doctor, and then tell them that he tells you that he can't guarantee that it will fix anything. He can't guarantee that it will make my pain better. He can't guarantee that it will prevent future surgeries. Most of all he can't tell me that he will fix it or cure it. It is hard to explain that even though I am going through the surgeries and trying to live with the decisions, that I am scared that the outcome will be no better than what I am currently living with. It is hard to explain all that and then not be apprehensive of the response I'll receive from them.
So I regress. I am left with more questions and no closer to finding the answers. I am left leaving a loved one just as confused as I am. I am left just as frustrated, angry, and sad as them. We all struggle with this illness and with the frustration of having no answers. We all feel, at times, like there will be no end to our pain. Then to top it off, we then have to live with the fact that we have burdened our family with our illness. We have spouses, (some of us) children, siblings, parents, and friends that have to pick up the slack where we fall short. They have to deal with the fact that we won't always be able to participate in the big moments in their life. I believe that the people that live with us are the ones that are affected the most and get as frustrated as we do. Day in and day out they have to watch us suffer and do everything in our power to act like it is ok. They have to listen as we are told that there is no cure and that this may be an issue for the rest of our lives. They have to try and figure out the answers and get no where right along beside us.
I feel like I am rambling on and on and being so negative on a day that is supposed to be filled with joy. I wrote this post because I found it intriguing that I was having difficulty explaining it to my family, and to myself, and I come home to find out that I am not the only one. As many people as I talk to, that suffer from this illness, it still surprises me when I find out am going through the same experience as someone else that is living with endo. It reminds me that writing this blog can be helpful. If I am having the same experience as someone I know, there has to be other women that are experiencing it too. We all seem to share a bond that no one else can comprehend. I feel it is my purpose in life to help other people live to see the day that a cure is found. I want to help young ladies and women everywhere to hold onto hope, and not give in to endometriosis. We don't have all the answers now, but there are wonderful Endo specialists that are working hard to help us find them.
Sometimes the answers you seek are just a click away. Sometimes it is comforting to know you aren't the only one thinking about this, feeling like that, or trying to find an answer that seems to be buried. Sometimes you relate to someone else and find answers without really looking. I hope I can help someone else the way others have helped me. We are over 176million strong, and together we will find the answers we need. 💛
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