I am not alone in my body. My torso is being used as a host for the most frustrating of parasites. A chronic, incurable but not terminal disease. One causes real pain, with real muscle cramping, real teeth clenching, real misery, real depression, real fear and real tears. It has a name which is almost impossible to pronounce when first heard and once pronounced is quickly shortened into the first two syllables simply because saying the whole word out every time would become almost as exasperating as the symptoms themselves.
This vile and unwelcome occupant of my body plays tricks on me and reminds me constantly that:
1) I am a woman, and
2) I am not a normal woman.
It is difficult to explain to others that what they assume is a normal cause and effect relationship (menstruation, pregnancy, child birth, menopause) is complicated because I have to throw in that ever-present factor of my disease. I believe, even after all the years of physical struggles that the worst effect this disease has had on me is mental. It is like being in a dysfunctional relationship only instead of a husband who is emotionally, sexually and physically abusive it is my own body doing it to me. I can’t fight it because I’m too young or the treatments would do more harm than good. It is a disease you are supposed to live with, you don’t get over it. You are supposed to learn coping skills and join support groups. You seek what understanding you can achieve from family, friends and co-workers, but unless they’ve had it, they don’t really understand, they sympathize.
My husband has always been supportive. We were still high school sweethearts when I was diagnosed and, being an extremely personal topic we didn’t discuss it much at the time. He’s always been very squeamish about medical things anyway. He holds me when I’m in pain, he listens to me when I’m frustrated and need to talk. He didn’t leave me when I told him that I may not be able to have children. He married me knowing the health insurance would be stretched to its limits. He loves me for who I am and he hates my disease right along with me. For reasons I still don’t understand he loves my body. I still get flustered and confused when he tells me I am beautiful because I don’t really believe him. It’s not that I think he is lying to me; it is merely that I think empirically I am not beautiful and he, in erred judgment, believes that I am.
I have never been at peace with my body. I remember when I was ten years old and got my first period. I felt sick all day and didn’t understand the stain on my underwear. My Mother almost cried she was so excited. All I knew was that I felt like crap and this dark brown stuff coming out of me did not look like the blood I was expecting. Blood was red and fluid. I’d seen it hundreds of times on cuts and scraped knees. This was entirely different. Mom laughed out loud. So, at the tender age of ten, I had breasts and my period, I became a woman! Let me say now that I would gladly go through life flat chested and hairless if it meant I didn’t have to put up with my constant unwelcome companion.
It is a reproductive disease. It is literally the endometrium (the lining of the uterus) in patches outside of the uterus. These “implants” can settle anywhere, on the outside walls of the uterus, on the abdominal walls, on the ovaries, on other organs, on the connective tissues in between. Anywhere they can float, they can land and make their home and feed on the estrogen my body produces. Of course, the whole point of this tissue is to shed itself periodically, hence the term menstrual period. As I mentioned before, I am not a normal woman. Not only are my periods erratic in timing, but also in nature. One could be short and light with only mild twinges on the first day; other can go on f-o-r-e-v-e-r (my longest was 7 weeks) and have heavy bleeding and intense cramping. The best part is the breakthrough bleeding. This is when you are on birth control pills but bleed anyway. Of course the pills do hinder it some, so you could get light spotting or in my case thick black sludge-like mucus discharge which won’t be absorbed by tampons or panty-liners. You simply wear them to protect your clothing and must take regular trips to the ladies room to clean yourself up before too much builds up and it spills over your Always.
Sex of course must wait until the bleeding (or sludge expelling) has stopped. It is hard not to think about it when your husband tries to remind you that you are still newlyweds and you can actually have sex during the week. Then the sad and shameful part comes into play when once again you have to explain to the man you love and desire that you are not in charge. Your body has taken over again, and you would love nothing more than to be intimately embraced, skin to skin but the disease always comes first. You could have sex if you really wanted to, but it would be a very NASTY affair. Such things are not signs of affection; they are for the depraved with a fetish for the Swamp Thing.
My chant, my mantra that keeps me going is “Take it out, I’ll adopt”! This would seem reasonable enough were I not diagnosed at the age of 18 when marriage and children were so far out in my distant future my doctor refused to discuss fertility. Now that I am married but still not seeking children I am actively taking steps to convince my doctor, or if she refuses, another doctor to give me a complete hysterectomy. Take it all and take it now, while I am still young enough to recover from it quickly. Doctors of course wouldn’t dream of this since I am only 26 and have not had children yet. What if I change my mind in the future and come back to sue them for malpractice? So, I am keeping a log of my symptoms. Writing down pain, pain relievers, describing my periods, break through bleeding and every explicit detail I can fit into those little calendar squares. I hope at the end of two years, with a lot of encouragement and maybe a disclaimer, I will get my wish. I could be post menopausal at the age of 30. This requires extra planning on my part. Heart disease and osteoporosis will be significant factors in my life at an earlier age than most women. Again, I remind you that I am not a normal woman. I am a super-woman.
I continue to hide my secret from the public. My horrible burden that I carry through life while pretending to appear quite ordinary.