This forum topic serves as a platform for individuals living with endometriosis and chronic pain to express what they wish their loved ones understood about their condition. Participants are encouraged to share personal insights, experiences, and emotions related to navigating life with endometriosis and chronic pain. Discussions may include the challenges of invisible illnesses, the impact of pain on daily life and relationships, effective ways for loved ones to offer support, and strategies for enhancing empathy and understanding. This forum aims to bridge the gap in communication and promote mutual understanding between those living with endometriosis and their support networks. Together, we can foster meaningful conversations that enable a deeper, more compassionate connection between individuals with chronic pain and their loved ones.
I wished my loved ones understood that just because I had a surgery to “treat” endometriosis, I’m not cured. The surgery didn’t heal me or give me a pain free life. I still struggle with pain EVERY SINGLE DAY. Because of the invisibility of endometriosis, this makes it much harder for people around me to see when I’m in pain if I don’t verbalize it. I wish my family understood some conditions are chronic and don’t have a quick fix.
I wish my loved ones understood. I will have good days and not so good days. I am in pain 24/7 it never goes away. There is NO cure for this. I may have to have multiple surgeries. It effects so many different areas. I am even more frustrated by this than you are.
I so relate! I had surgery and everyday I get told by someone in my family, “well it’s gone so you essentially don’t have it anymore” while I’m doubled over in pain. Or like today for instance, “I thought it was supposed to be gone from the surgery, I think it’s all in your head,” while I have 2.7cm cysts on my ovaries and am still dealing with the pain. And you’re glad they don’t understand, bc if they did, they would’ve ran to the hospital at just half the pain you deal with. It’s just hard when you know they care but there is so much old misinformation out there.
I wish my loved ones understood that even though I’m strong, sometimes I wish I was more taken care of. On my bad days I’m the only one caring for me. If I don’t feel like doing something, it doesn’t happen, or I do it in pain. I wish I had someone to come to appointments with me for support, or at least check in on me afterwards to see how I’m doing or how it went. I just really wish I had more support.
I wish my Family understood that standing for hours at a job, picking things up , doing my daily life, and my Career itself because I am a Dancer, feels as if all my dreams have shattered and my life will just consist of working pointless jobs just to afford the next surgery to go back to work again. And when you sit at home alone in pain its so heavy the next step seems impossible.