I sent out a message to my closest family and friends asking them
"I'm getting ready to write another blog post and its going to be about the family and close friends in my life who have been affected by me having endo. Id like you to tell me how my endo affected you and our relationship. What have you learned that others with endo could maybe help them understand how it affects our loved ones."
I have learned in these responses that it affected my loved ones more than I thought it did. Some of my actions that I didn't even realize were noticed by my family and friends. These are some of the responses I got:
Growing up I have had the opportunity to watch you overcome so many obstacles related to your condition. I have watched you cry, I have watched you suffer, I have watched you clench in pain but most of all i have seen you, through it all, smile. You have revealed that in life there are things that will beat you up and tear you down but what you make of them is what defines you. Every day I prayed for you, I prayed for the baby you lost, I prayed and continue to pray for Lucas Matthew, the boy that truly has that smile and fighting soul I see in you. If I could pass on a message to anyone suffering the way I saw and see you suffer, I would tell them to never stop, never stop fighting for themselves, never stop living for what they believe in, I would tell them to NEVER give up, because after all that is the message you have taught me. Endometriosis to some may be just a condition but to our family it has been a lifestyle, a change that had to be overcome and a hardship for each and every one of those who crossed paths with you, to deal with. Endometriosis might be your enemy but it has shown your true character in standing true to not only what you believe in but in fighting for others who are silent. Your hardest times have lead to the greatest moments of your life. Reinhold Niebuhr, once quoted, “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” This quote to me shows such importance in your story and the constant battlefield you are on. You have taken your diagnosis and grown from it, you have defined your character and you have made a difference for others. In ending, I hope anyone who reads this never gives up, don’t lose hope because after every storm, I promise, there comes a rainbow.
Since I was little I have always been super close with Brennan. I've grown up around boys and I've always wanted a little girl cousin that I could watch grow into a woman and do things with. I remember when I found out you were pregnant the first time, I was so excited. I would be happy boy or girl, but I wanted a girl more than anything. I remember finding out you had lost the baby and it broke my heart. What you and Uncle matt and Bren had prayed for was gone and our whole family was crushed. I prayed to god you and our family would receive a miracle. I knew a miracle would come and you would win, battling Endometriosis. Sitting at Mom Moms and Pop Pops on Christmas eve, seeing you fake a smile after losing my cousin was heartbreaking. I knew you were heartbroken but you smiled because that is the strong women you are. After long days of fighting this disease you got pregnant again. I remember how scared you were to lose Luke. When I found out he was a boy of course I was bummed. Another boy i had to put up with lol. But I was still happy. The day I held Luke, He was so tiny being premature. But I fell in love. I have learned that my aunt is one of the strongest people I know. My nanny has always told me to just be yourself because you can't change. she takes who she is and inspires other people like her. This disease is so much bigger than a disease. the way she takes what she is given and fights, inspires me. She keeps battling this disease everyday and on top of that helps other women battling it. You inspire me nanny. I love you.
Sister in law:
She also has endo. and shared that it made her feel less alone because someone finally understood what she was saying and feeling.
Too often we grow immune to the things that we hear frequently. When we hear someone complain or talk about pain and how it prevents them from doing things we just take it in stride. We do not have a visual reference for the trauma we discount the affect it has on the individual. This condition can carry the psychological pain of someone trying to conceive a child. So now, when I hug my stepdaughter I am not only hugging for the moment but I am hugging for all the hugs I missed during the time when there was no diagnosis.
A person with a chronic illness has a lot of resilience and strength. It has also given me the insight to encourage people to not prejudge others who have health problems that cant be physically seen.
You have taught me that it affects more organs than just the female uterus. I had no idea about that. Also, how often you were ending up in the hospital was very eye opening about how much it affects your everyday life.
What was hardest for me was knowing what kind of pain you were dealing with and choosing to fight the disease and have children. I believe I called you hard headed for that.
Shannon, my memory of your struggles with endo led you to not wanting to go to school (like lots of teenagers). Had I understood endo more I could have been more supportive of you. I am so, so sorry that I was ignorant of this disease.
I think if I knew more about it back in the day we could have been more empathetic, sympathetic, and attempt to help you more. Not knowing how severely it affected you in particular and the issues it causes and effects it has. I would have offered to help more in anyway I could. The more we know the more we can help and be there for you.
I wish I had known how much pain you were actually in and offered to help more than I did. I remember you telling me how much pain you would be in yet you preserved with all of Brenan's sports games, cheer and work. It showed me your strength and determination to not let endo hold you back. I learned that you told people of your pain, yet medical professionals and family didn't see it. I learned that "simple" or "common" symptoms that could be anything normal could actually be something serious such as this. Your courage, your suffering, your strife have all been an example to me of a strong mom who gets what she needs done regardless of the internal pain you suffered. You put a smile on your face and hid it so well from others while crying on the inside. Your story is such an inspiration and example and I wish I could have done more to help you.
Sister in law:
Shannon and I knew each other long before she was my sister in law. It was a long time before I knew of her struggles. I myself was checked for endo because I had many symptoms, knowing what I went through is nothing compared to what she has as she struggles with this disease. It has been hard watching her struggle with pain and all of the other symptoms that prevented her from going to family activates or having to leave early.
I wish that 20 years ago I was mature enough to be empathetic to what you were going through and listened to you over what the Dr said. I hate that you felt alone in those years because I have been in that position. Thank you for never making me feel alone in my own journey with pelvic pain and issues. I'm so proud of you and the courage you have to tell your story even when its a room full of men. Knowledge is of upmost importance so those we don't know are able to be empathetic to those suffering. You have become the voice that so many women lack and are putting a face to something rarely ever discussed. I know it pushes me as a mom of a daughter to listen to her and respond instead of brushing her off. Your strength is admirable and something I strive to emulate in my life.
She is a huge part of my heart. When she was born I promised she would always be loved and protected. I FAILED. I took her to so many doctors for her abdominal pain and they all said the same thing... no diagnosis. Our relationship became a train wreck. Trust was broken, I felt helpless and hopeless for years. It is just now we have begun finding our way back to each other. Endometriosis affects everyone not just the patient! Love you my warrior girl!
I have realized through asking this question how much it does affect our loved ones. We know they care and they try to help. I know in my case my family and friends are very supportive but there are still so many days where I feel alone and I'm thankful to have the support system I have. I am going to try and remember these things the next time I get frustrated and feel alone. I have an entire army that loves me and wants to help.
I have also learned that when I feel like giving up I cant because there are young girls that watch and learn from everything I do and think. I honestly never thought about it from their perspective especially because they are so young but they notice everything you do. What if I had given up? What if I didn't fight endo and I let it control me? These girls I love so much wouldn't fight for themselves or what they deserve.
Maybe sometimes its not best to hide how we feel. How will anyone know the extent of our pain if we don't share it. I obviously could have been more open and I'm sorry I wasn't because the people I love don't feel like they were there or supportive when they actually were.
Just remember the next time you feel like giving up or not fighting this disease or any other disease you have lots of people who love you and support you. People who will fight on the days you don't want too. When you feel alone you really aren't. Each of us has an army, just trust them.