One of the aspects that most Endo sufferers don’t touch much on is how the relationship with loved one’s changes before and after a diagnosis. It is very personal and understandably hard to speak of. You will think that they will stay the same, but they really change especially when it comes to family. Some relationships will change for the better but others not so much. There are people that will stick by your side and others that will walk away. It is important to be prepared and let those who do not support you walk away from your life because it is better in the long run.
I will get real here! I will speak about some relationships that really marked me, but I can’t speak about all of them because this blog will be super long. For many years, some aunts told me that I was a hypochondriac. For those of you that don’t know what this is, here is the definition. Hypochondriac: Obsession with the idea of having a serious but undiagnosed medical condition. Hypochondriasis usually develops during adulthood. Symptoms include a long-term and intense fear of having a serious condition and worry that minor symptoms indicate something serious. A person may frequently visit or switch doctors. – Dictionary source
I started having very bad cramps at an early age and I had to miss school and soccer practices among many other things. My aunts would constantly make little comments about how much I got sick, missed school, and complained about my health. They questioned my sexual life and even my mental health. I understand that people from the outside can’t understand what we go through, but it becomes harder when people close to you question your pain. Despite it all, I remember always trying my best in school and sports and surpassing those “healthy”, just to prove that I was not lazy and that it wasn’t about me wanting to stay home or get extra attention.
It becomes even harder when doctors can’t confirm or give a reason for your pain. When that happens, it feels like your power is taken away from you and that maybe those comments are true. On the other hand, things changed for the better with female members of my family after the diagnosis. I am not going to lie, after my diagnosis, I blasted!!!! Pictures of my laparoscopy to everyone that had told me that it was all in my head. Yep, you hear it! A bunch of people got nasty photos of my inside. It was a relief and a way for me to show them that my pain was real, and it had a cause.
After the diagnosis, I was much older and having truthful conversations about my illness allowed for deeper connections. I learned that some of my aunts had symptoms in their youth and they were never diagnosed. I learned of cousins and friends that have endometriosis and I feel less alone as I spoke to them. I learned that most of my female family members have a menstrual story to tell and because of our society were too afraid to tell it. It is amazing to know that I can speak freely to my family about my condition and know that they understood what I am going through.
My Parents were unconditionally there and have a lot of love for me, I am lucky. Before the diagnosis: I will share a story about my mom to give depth about her reactions. My mom suffered from extreme menstrual pain most of her life and apparently my grandmother as well, therefore she was one of the few people that understood my pain… but not really. She is from Colombia and life is much different for women there. My mom lived in a patriarchal society that doesn’t care much for women menstrual pain and she was a product of many years of suffering in silence until a few years ago in Canada that she had to have a hysterectomy. She was always a call away when I was in school to pick me up if needed and I knew I could always count on her help when I was in bed and could hardly move. I remember just making a phone call every time I was in school and in pain and she was always there. For all of that, I will eternally be grateful.
But she also thought I could be stronger and handle the pain better. She used to remind me how hard it was for her, she was forced to work in pain, to take public transit in pain, and to be a daughter, mother, and wife in pain. I understood those were harder times and I know she was only trying to help me get stronger. She wanted me to work my pain mentally and, in a way, be stronger like her. Because she never had a diagnosis, I brought the sense of helplessness into her life, she didn’t quite understand why I was in so much pain even after every my gynecologist appointment when nothing was discovered. Like any mother and daughter relationship we went through a hard time, at some point in my life she became more concerned about my sexual life than what I was going through, and it was a very tough time. My father in the other hand has always been there, he is the father that you see at the grocery store with menstrual pads, ice cream and probably cookies too. He is truly a trooper and never even questioned my pain for a second.
After the diagnosis: I was told that I have a very low chance of conceiving because of my stage four endometriosis. At this point in my life, I had a stable relationship for many years, and I was thinking of starting a family. When my parents found out about my diagnosis they were extremely concerned and somewhat felt responsible for not doing more when I was younger. It was a hard time because you could feel their frustration, grief, and anger about it all. At first, they thought it was a curable illness, that I could have kids and it would go away, and now that I knew what it was, I could battle it and treat it. It took many hours of talking to them and showing them my laparoscopy pictures for them to understand the gravity of it all. It took me hours before those conversations of me reading and learning about endometriosis before I could explain all the theories and different information that was out there. It took me many doctor appointments to go over the best medical plan to go forward with. It was not just one get together, it was months of truthful conversations and weird phone calls full of questions from their part. They were kind to go online and research but also provide me with “miracle” remedies of how I could cure it. I was patient and somehow, I took the whole situation “not personal.” The act of them researching the illness on their own and trying to give me advice of remedies was an act of love that I very much appreciate it even if I knew they were not going to work.
Why am I writing all of this you may ask? I am writing this because I believe that by storytelling, we can learn a lot. I have received many emails and Instagram messages of women wanting to connect to others suffering from endometriosis and in situations that they simply don’t know how to handle. I heard of difficult situations with parents that don’t understand what their daughter is suffering, and it is causing tension in the household especially when they live with them. I have heard of family members accusing them of being lazy and not helping enough. I heard of partners just walking away and not wanting to deal with the illness aspect of our lives. I have heard of women that just are confused and would like to know how I dealt with different people in my life and endometriosis.
I am writing this because I want people to know that they are not alone. The personal struggles that endometriosis bring are real. With endometriosis, we deal with physical, mental and social pain. It is a reality that we can’t escape, but I believe that with strong communicating skills we could overcome it. It is not easy to talk to the men and women around you about your body and your period but once you start talking you will see that they are ready to listen and the more you talk the more you want to talk about it. Next thing you know, you will become a beacon of hope for others without noticing it and the best part is that you will be ending the stigma about reproductive female problems and at the end, we might actually bring worldwide attention to this issue and raise more money for research and maybe one day find a cure.
Please let me know if this helps you in any way and if you would like to see more of these. I have many more stories to tell about how my now fiancé reacted to the endometriosis diagnosis and many stories before the diagnosis. I want to connect with each of you at a deeper level by opening a little more about my life and struggles.
Be brave, Be Bold, Keep Fighting Endo Warrior,