Wednesday, March 6, 2013

Endometriosis Awareness Month

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This month is Endometriosis Awareness Month. 

This March also marks the first anniversary of my diagnosis and laparoscopy, and potentially the beginning of my younger sister's journey as she is currently being investigated for endometriosis.

I get upset thinking that my sister might have to go through the same crap I've been through, the same pain, fatigue, misunderstanding and dismissal from health practitioners and other people. The same uncertainty.

You know what I think the number one issue for endometriosis sufferers in general is?

It's not the pain - although for some this can prevent them from working or leading the life they want to lead.

It's not the fatigue, or the nausea - again, you learn to deal with these things when that is your life.

No, all of these issues are ones that we find our own way to cope with most of the time, although sometimes we cannot overcome them.

No, I think the biggest problems are the unseen effects. It's the self doubt and rock-bottom self esteem that sufferers experience after years of denial and dismissal from health practitioners. It's the feelings of uselessness when you can't do the things that other "normal" people can do, because you have an invisible war going on inside you that others cannot see, and you are so tired. When you have to re-assess your dreams because maybe your body just isn't capable of doing those things. For some women this will include the news that they will not be able to have their own biological children. For other women, it will be the realisation that maybe they can't pursue a career that they wanted to because their body cannot handle it. It's the loss of intimacy in relationships because the thought is too painful. It's the feeling like you are crazy because your boyfriend says that you can't possibly be in that much pain, and that you should just get over it. It's the events you miss out on because you can't get out of bed, or if you can get out of bed you're bleeding so much that you will most definitely bleed through that super tampon on the 2 hour beach trip. It's the monthly bedsheet bleaching because the pad leaked again, even though you invented a double pad contraption this time and it was so heavy it still got through. It's the awkwardness at work when you have to explain your repeated absences to your middle aged male manager who thinks periods are gross. It's the jobs that are lost because of the absences and misunderstandings. It's the defeat felt when trying to explain that endometriosis is not necessarily "cured" by pregnancy to people who insist that "That's what fixed it for my cousin/best mate/neighbour/hairdresser/sister-in-law!" It's when you feel like all your efforts are futile when scientists spend their endometriosis research money on judging whether women with endometriosis are more "beautiful" than the rest of the population, instead of trying to stop this damn disease. It's the days you struggle through work trying to concentrate and act professional when all you want to do is curl up in a ball and cry.

It's easy to get disheartened when living with endometriosis and trying to spread awareness.

So what's my ultimate goal?

I'm not asking for a cure (although that would be nice);
I just want the day to come when women are taken seriously when they visit the doctor with pelvic pain; when there is enough awareness in the community of endometriosis that women do not assume that having to terrible pain and fatigue is normal; when sufferers do not have to explain themselves.

*Disclaimer: I am not saying at all that the pain, fatigue and other symptoms that come with endometriosis are little things. They are not. There is still no effective treatment for endometriosis. Endometriosis can significantly affect lives to the point where women are rendered immobile or other organs (such as the bowel or bladder) are invaded with endometriosis to the point where they lose functionality, causing further health complications. However, these symptoms are magnified ten times over if the patient is constantly trying to get their condition taken seriously. 

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness.

4 comments:

  1. You are so right. I wish Endometriosis didn't exist. It affects so much of our lives! Fight on, Endo-Sister!

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  2. You are dead on! I received my Master's degree in Pastoral Care & Counseling and trained to be a hospital chaplain and loved it. If someone asked me what I would love to be doing without the restrictions of illness, chaplaincy would be it hands-down. Unfortunately my body cannot deal with being on my feet and 24 hour shifts so, at least for now, I have had to put that dream aside. It is incredibly frustrating because no one really sees or considers that part of illness. Thank you for taking part in the Blogging for Endo campaign! I have been so encouraged reading everyone's posts!

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