Narrative Of An Invisible Disease

3b6f33f2 copyI suffer from an invisible disease. I often look put together and function well, but inside my reproductive organs are fighting a battle every day. This is endometriosis.

If I don’t discuss it, people generally have no idea that when I go to work I often have lower back and leg pain so intense I have to breathe through it. Or when I go to school I sit through seminars and hope the pressure that feels like a tiny bowling ball pushing down on my uterus subsides so that I can participate. Or if I’m out with my friends I have to avoid alcohol because the side effects are non negotiable to my reproductive system and the organs that surround it.

Generally it doesn’t come up in conversation. There are many women who are told by their family, friends and even doctors that they’re hypochondriacs or that they’re crazy because the pain we deal with can’t be seen. But it’s important to explain it, and then explain it again until we’re heard.

***

It began when I was 14. I was at school and felt so sick that I was convinced I had the stomach flu. After several months of feeling this way and one too many absent days on my report card, I went to my family doctor. He told me the pain; the nausea and the cramps, was most likely endometriosis and that there is no cure. He told me the pain could be minimalized with the birth control pill. There are many parents that would have refused to allow their 14-year-old daughter to take birth control. I was lucky enough to have a mom that could see my future. If she refused that course of treatment I would have struggled to make it through high school, potentially have failed to achieve grades high enough to go to university and certainly never would have been accepted into graduate school, where I am now.

Unfortunately the use of birth control as treatment is not perfect. I spent most of high school and my undergraduate alternating brands and visiting my family doctor. But it kept the pain at bay until I was 24, when I realized this could not be my version of normal anymore.

There is a reason the average age of diagnosis of endometriosis is 25. The tissue most women get rid of when they have their period builds in us for several years. Unfortunately allowing it to build often means by your mid 20’s it has spread to your ovaries, outside of your uterus, your bladder or your bowel. Once it gets to this stage the pain is so bad that it abides by no timeline; you are often either in stage three or four of endometriosis. I was in stage three. PMS was a week before my period (which actually is how PMS is defined, not when you have your period), followed by the pain of the period then wrapped up with the pain of ovulation. By the time the pain has subsided the glimmer of hope was in the potential of the solid week before it starts again. Most of my time was spent waiting for the pain to return. A few days of living without was is my victory.

I was 25 when I had my first laparoscopy, but it won’t be my last. Five months after my surgery the pain returned, not as debilitating as before but on the same scale of intensity. My gynecologist told me I would need another surgery in 5 years, barely enough time for the scars from the first surgery to heal. I will likely have a hysterectomy by the time I’m in my mid 30’s. Unfortunately after that there still won’t be any pain free guarantees.

There is a label on endometriosis that it is a fertility issue, and stands alone as a fertility issue. But it is a disease that affects all women that are diagnosed, not simply those looking to get pregnant. This disease affects young women long before child bearing is a thought in their mind. In that sense, it is ironic that the organs that are meant to carry a baby cause many infertile women the most physical pain. As if we need a constant reminder that this pain will not offer any reward to some of us.

I will admit the possibility of infertility doesn’t concern me. I don’t say this to undermine women that battle infertility as a result of endometriosis, their voices are important. But the voices of those of us not concerned with conceiving have been drowned out. As a single 26-year-old woman, I am constantly preoccupied thinking about how I will manage my pain and work full time. I also think about how it will affect future relationships. Explaining endometriosis to a man can be difficult, but hopefully to the right one it won’t be. Most of all, I concern myself with my day-to-day life. There are days endometriosis relates to diseases similar to Crohn’s or Colitis, other days it feels like mild flu symptoms. It is a fluid disease that uses women’s most powerful organs – the reproductive ones – against them. I have to strike a balance between taking care of my body and maintaining a social life that I won’t feel I missed once my 20’s have passed me by.

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I want to be a powerful woman, with a great job and sometimes the toughest battle is the psychological one; silencing the voice inside me that says this disease will dictate how I live my life. So I’ve adapted. I have had to strike a negotiation with the non- negotiable parts of my body essentially deciding it’s one for me and one for you. If I go out on a weekend and have one or two drinks, I have to compensate that with two or three months of avoiding alcohol or else the flare up will last for weeks. On the plus side, I believe I have the purest liver of any 26-year-old on Earth. Regardless of what I negotiate, there is always pain. And for the foreseeable future, it’s not going away. I simply call the shots on what I am willing to sacrifice.

As is the case with most diseases, the narration of my story isn’t meant for recognition or pity, but maybe a little bit of insight. It’s to let you know that many of us fight invisible battles every day, and we will fight like hell to win them.

Leanne McAdams is a Master of Arts Candidate in Political Science. Her research and writing interests include women’s political participation, reproductive rights and gender equality.

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