Illness Evolves

It is happening again. Small, dark drops of blood on my underwear. I go over everything that might have triggered it, hating myself for being too lax and hating my body’s rebellion even more. “If I had only taken the pill on time…” I mourn. I have to remember I won’t die. I have to remember that this, although painful, is natural. And then I apologize to my body; I cannot give it what it wants.

The struggle in learning to love my body has been a long one. Not just the external curves, trying to fit into clothes, bad haircuts or even broken bones that can be healed, but my actual physical weaknesses that I have to live with. Glasses were first, heavy and bug-eyed. An obvious target for being teased, but easily hidden once I convinced my parents of my responsibility to own contacts. But my poor, afflicted uterus and ovaries, have no such crutch to lean on. Small, microscopic clots of tissue and blood congeal and grow on the inner surface, throbbing with hormones. They are by all respects, invisible. They have caused me excruciating pain, to the point where I can often not move, since I was 11 years old.

I carry on, best I can. Birth control allows me to contain the number of periods that I have each year. Periods cause the worst pain and cramping, and up until recently were the only times when the physical symptoms revealed their pain. The emotional ramifications are some I still struggle with. “Why am I like this? Am I being punished?” and the fear that while the pain may be temporary, it will always return.  Most endometriosis isn’t even diagnosed until women begin trying to get pregnant, and can’t, around age 30. They have powered through their lives in crippling pain, assuming that these we there typical cramps every woman on Earth has had to deal with. Their is relief in a diagnosis, and mourning in acknowledging that your body is defective. And there is non-invasive laparoscopic surgery to remove the growths. It increases the likely-hood of conception- and after a healthy pregnancy it is less likely to return in severity or at all.

I was 14 when diagnoses, via internal ultrasound. I am 27 now with no stable career or romantic prospects to start a family with. I have had access to pioneers in the field of endometriosis, multiple therapists and treatment plans. 13 years with a diagnosis, and no cure or treatment. Not attempting to get pregnant means that even with the surgery, the endopic tissue and scar tissue will more than likely grown back. So I take my birth control daily, having a period every 4 months or when some of the blood breaks though.

I cannot support a child mentally, emotionally, physically, or fiscally. Yet my body aches and tantrums for one. I am broken and I have to reveal my pain to others so they can understand. The pain and the strife effects my work, when I have been prone to fainting spells and abdominal migraines that simply take me out of commission. I fear it oncoming. I fear the dark, old and clotted blood that might drip from inside me. I have no control, no way to fight it. I have to give in and sacrifice my passions, relationships, and working life to the pain.

Add this fear to the already emotional flux with a menstrual cycle, and I am a mess. A well informed mess. I want better for myself and for anyone who has to deal with invisible illness. I ask my body what it wants and it doesn’t say happiness, or thinner thighs, it screams baby. I can only do so much, and the body’s needs fall to the bottom of the priority list, especially when I feel so helpless to fix the problem once and for all.

I want to help women learn and love their bodies. I have been very lucky to have a high libido and enjoyable penetrative sex with my partners. Others with endometriosis aren’t so lucky. The sex can be painful and unfulfilling, and a lack of knowledge about their bodies causes undue hostility in romantic relationships. I felt like a monster for so long because my desire was so great, pain so intense, appetite so insatiable. I felt like I could not possibly give enough to my partner, and that I was asking for more than they were able to provide. Learning more about my body and my sexuality empowered me and allowed me greater acceptance, but I have not yet outgrown the pain.

Every time my lower abdomen twinges, I am full of fear, a 14 year old girl in an OBGYN’s office. But I can only maintain my body. I am not something that is broken and needs to be fixed. I am me and my pain is my own. It allows be empathy and boundaries and love and acknowledgement of my shortcomings and my strengths. It only defines me when I let it, even when I am lying crippled in bed. I am stronger than the sum of my parts, and keep being thankful for those who have helped me through it. My goal is to accept and make necessary accommodations for my body and my mind and to find those who will help me ride through the process. I am allowed to be frightened, and to fight the pain, but I don’t have to do it alone. If you are suffering, you don’t have to go at it alone either.

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