When you look at me you see my smiling face, happy attitude, and friendly personality. What you are actually looking at is on the surface.
Not all of my suffering is visible or obvious. On the inside, I have Endometriosis, a fairly common but poorly understood disease that is frequently undetected, untreated, and misdiagnosed. It has no cure and is ruled by hormones, organs, and time. It isn’t who I am. It is just what I have.
I am my own doctor, pharmacist, and health advocate. I know my myself better than anyone else. Especially, what it is like to live in my body.
Medical professionals may not understand the urgency of my case or severity of my pain. This is why I take action. I do my research. I go into appointments with everything I need to talk about written down. I carry in any important documentations. I make sure I get every question answered. If I don’t, I get a referral or find a second opinion.
Living this ill is living with the unknown. I never know when I’ll have a “good” day. At any moment my symptoms can flare up or side effects from my medicine can kick in. This is why I am open and honest with those I trust with the details of my chronic illness. If I am not up front when I am unable to walk across campus to be in class, need extra time on an assignment or unable to attend a required event last minute, they will not understand that my body is telling me to slow down, I can’t do this or that. Trust me, when I say that having a chronic illness is not a “get out of things I don’t want to do” card. I am just focusing on what I can do and not what I can’t do. The Spoon Theory is enough said.
Colds go away. Infections clear up. Broken bones heal. But my chronic illness doesn’t go away, clear up, or heal. When I am in constant pain and not feeling well I find anything that can get me through the next second, hour, or day. It easy to become a homebody during this time. However, if I am feeling up to going out, I do! It is just tricky to find where the line between going out and having fun or going out and wearing myself out to the point of ending up even sicker is. I think that this is why I understand the value of time. I listen to the clock ticking away the seconds as I am sitting in waiting rooms, driving to appointments, and laying in my bed unable to move from pain. It is when I am well enough to leave my bed, simply sit and enjoy a cup of coffee in the morning or able to take a walk with my dog in the afternoon is when I recognize the minutes.
I realize that living my life with a chronic illness is about thriving rather than just surviving. There is power of being on my own team, of understanding my mind and body unified, and knowing that my place in this world is meaning-making and wisdom-sharing with others. There is no guidebook for lifelong illness. Only constant questions and often no answers. This is my story but ask others. The internet introduced me to a world of people who are all suffering in silence. However, they come together to fight the same fight as I.
