Every now and again I find myself stuck in a fog. My mind seems to drift between not wanting to surrender to adeno/endo and not wanting to do anything because of those illnesses. I guess that’s why I haven’t written this second part yet.
I keep writing and rewriting this post in hopes of finding the courage to speak my whole truth. And that’s not because of my fear to tell others what I am experiencing daily; I truly want to be opened about my pain, hence my series of open letters. But the real fear comes from putting my daily suffering down on paper. For, once it is on paper, I have to admit the truth to myself.
I started this two-part post a few months ago, because I was fed up with the media. I was frustrated with the same commercials that say, “Talk to your doctor” or “I have endometriosis and I talked to my doctor.” These commercials always lead me to a tangent, because I have talked to my doctor. In fact, I have talked to seven different doctors and specialists. And yet, no one has any good options for me.
But what you cannot get from those commercials is the side-effects of endo/adeno. These side-effects aren’t the physical suffering or medical conditions that we experience, but rather the impact these chronic illnesses have on our #endowarrior lives.
So if you want to know, here are some of the ways adeno/endo can affect me on a daily basis, even when I am not on my cycle.
(Warning: Mature content below. Reader discretion is advised. I apologize if this becomes an endless rant)
I am going to be completely honest, I am in my early 20s and have never been in a relationship. At first, it was because of my health. In high school, I had three different surgeries to try to help my pain. And when I wasn’t in recovery, I was either in physical therapy or reliving the symptoms again. Between all of these different scenarios, dating didn’t even cross my mind.
At the start of college, I was finally free of medications and side-effects, as I decided to stop all treatments. As such, I was feeling more of myself (on my good days) and started meeting other people and socializing. But even to this day I cannot find someone, because I am afraid of putting myself out there. I learned quickly during Freshman year, that guys my age want what I can never give them: sex. I have held strong values on this my whole life, just based on my personal values. But then, to add to those values, it became very clear to me that sex is not going to be pleasurable for me. And therefore, I want to find someone who is extremely understanding of that and committed before I make any decisions. Sounds like a good plan, right? Except, I cannot find any guys at my age willing to be in a relationship like the one I have just described.
2. The head tilts and sympathy awws
I love my close family and friends, as they are the strength that keep me going. However, I hate when some people give me their sympathies and wish me well. For instance, twice last month, I heard from two completely different people, “oh, so you’re in pain. So as I was saying…” when they asked why I was so pale. I quickly told them I had endo, and gave no definitions or further explanations. They tried to quickly change the subject, as if to pretend it never existed. Even worse than those responses is when my colleagues and acquaintances try to show me sympathy. Their sympathy can come across as demining, as if to say “ah, so you truly can’t handle life.” Even when their sympathy comes from a good place, I feel like the world is judging me. I feel as though I need to mask my suffering even more, because when I don’t, others think I am not handling my situation well. These thoughts may be simply in my head, but they still are ones which I constantly battle with.
I have lost many friends due to my lack of energy or willingness to leave my house. For the most part, I have 5 to 10 good days a month. If it’s not one of those days, then I find myself either in a fog or suffering immensely. I am even now trying to avoid alcohol, because I want to eliminate everything I can to feel better. Some bloggers believe that alcohol makes the pain worse, so I have decided it cannot hurt to try to avoid it. It’s just one of many things I avoid for the sake of endo/adeno.
4. The toll on family and friends
I know I talk a lot about my own suffering and symptoms. But what I never have a chance to mention is the toll my pain takes on those who are close to me. My poor mother is becoming tired of hearing me complain. Not because she doesn’t want to hear it, but simply because she knows there is nothing she can do to help me. My close friends are always willing to hear my complaints. But I feel awful ranting to them, as it makes me feel selfish for doing so. Even my brother has been a great support, the poor guy knows way more about women’s health issues than he should. All of these people are my rock, they keep me going even when I don’t believe I can’t. And it hurts to see them upset for me, as we all know there’s nothing that can be done. That’s one of the reason I started this blog again; I wanted to find a way to rant on and on without having to do so to one of them.
Takeaway: Even if you only read the first paragraph, I hope you read this- I may suffer, and I may hate my chronic illnesses, but I am determined to not those illnesses win. It may take a village, but I want to prove to myself that I can overcome these diseases, one day at a time. I hope if you are suffering too, that you read my post, It’s the Little Things in Life. I want all of us #enowarrior sisters to fight this disease. Even if we cannot find a cure, which I pray every day we do, I hope we can work together to stand up and live our lives the best that we can.