Identity Crisis: Defining My Womanhood

2010

I vividly remember sitting in the waiting room of the doctor’s office near campus. My boyfriend (who is now my husband) sat in the chair next to me flipping through a dated Time magazine. I hoped that I was going to leave with a prescription for what I was hoping was a kidney infection yet in the back of my mind swirled deeper fears – what if I can’t become a mother?

My name was called and I went back to an exam room making a pit stop to pee in a cup to check for infection. I anxiously waited sitting on the edge of the exam table. The minutes seemed to last for hours as I stared at the floor (why don’t they ever keep magazines IN the exam rooms?). Finally the doctor made an appearance. ”Good news,” she says, “you do not have a kidney or a bladder infection!” Crap. Either of those would be easy to fix.

She began asking for more information about my pain. When it started. Where it hurt the worst. Any other symptoms. The whole 20 questions. She had my lie down and began to press on my abdomen to look for points of tenderness. It didn’t take her long before she said the words that would turn out to be life-changing – “I think you have a female problem. I am going to refer you to see an ob/gyn right away.”

I was 21 at the time. Not sexually active. Five hours from home. Only a few weeks into my final semester of college where I was doing student teaching at a local elementary school teaching music. This was an appointment that I wasn’t hoping to make for awhile. Thankfully, they were able to get me in quickly and God had pre-ordained for me to have a wonderful doctor who would prove to be an absolute Godsend in the years to follow.

Within three weeks, surgery was scheduled to confirm a diagnosis of endometriosis. At that point, the only thing I knew about endo was that it could cause infertility. Surgery confirmed what we suspected and the search was on to find answers and pain relief. Over the next few years, we tried treatment after treatment and birth control pill after birth control pill in search for pain management. I did a 3 month course of Depot Lupron which I wasn’t sure I would survive (or anyone around me). Honestly I am shocked that it was during that time that my boyfriend became my fiancé and actually agreed to marry me! Me + Lupron = not pretty. My body went through changes that it wasn’t meant to at 22. I was in a medically-induced state of menopause so I had the night sweats and the hot flashes. The whole 9. I felt as far away from womanly as possible. I did not sign on for a second course of treatment.

In May 2005 the wedding bells rang and thankfully I was able to lose the Lupron weight and squeeze into my perfect wedding gown and walk down the aisle. Something that John and I always knew was that we wanted kids. Six months laster we began trying to get pregnant. The months ticked by. Pain levels rose. Then there was a second surgery. More months ticked by. We began fertility meds. Pain levels rose. Then there was there was a third surgery. Then there were more invasive fertility treatments. We were out of luck and out of time. Pain became more than I could bear.

My body had failed me. The job that I was created to do (in my mind) I could not perform. Wasn’t God’s first commandment after creating Adam & Eve to “be fruitful and multiply?” Instead of feeling fruitful, I felt rotted and wasted. What did that make me?

The weight of that question came crashing down the day of my pre-op for my hysterectomy. Due to scheduling conflicts I had to go alone. John really wanted to be there but I thought it would be no big deal. A vial of blood, a pregnancy test, and a stack of papers to sign. No biggie. I was alright until we got to the last form.

It was short and to the point. It read “I understand that this surgery will make me permanently incapable of bearing children.” The only other thing on the paper was a line to sign and date. It was if the weight of the world was on my shoulders. My eyes burned as I fought back the tears. My hand began to tremble as I put the pen to the paper. I drew my hand back. I wasn’t sure I could actually go through with it. The words “permanently incapable” rang in my ears. I tried my best to shake it off and scribbled my name at the bottom of the page and was given my orders of when and where to arrive for surgery.

I remember laying in the hospital bed the morning of surgery wrapped in my prayer shawl terrified of what was to come. I was surrounded my family and friends so I was holding it together until the nurse came for me. I lost it. I remember clinging to John’s neck begging not to go. That early May morning, I was losing my womanhood.

I mean, what is it that makes you a woman? A uterus and a pair of ovaries right? Isn’t that what we are taught in anatomy? I would still have boobs, albeit lopsided boobs thanks to fertility treatments and the HRT that followed. But what else?

I was prepared for the physical pain following surgery (well as much as one can be) but I was not prepared for the emotional and spiritual pain. In the two years since my surgery, I been on a journey to redefine my womanhood…beyond my anatomy.

I have learned that I can be strong yet graceful. Determined yet gentle. Edgy yet feminine. I have learned that being a woman has more to do with my spirit than with my ovaries (or lack thereof). For too long I have let my endometriosis define my womanhood.

image from weheartit.com

An Open Letter

2010

I found this letter after reading it on Casey’s blog, My Lyme Diary, but now that it has been circulated around the internet in chronic illness circles yet the author is unknown. After reading the powerful words, I just had to share it with all of you.

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.