Tuesday, December 6, 2011

So now what? Post Holly Endo fiasco

So yesterday I did a post summarizing the past week's events concerning a certain Holly woman and some thoughtless comments about endometriosis. Tonight I wanted to follow up with what action could be taken now, what some people have done, and what I personally am doing.

The topic covering that some pretty thoughtless comments about endometriosis sufferers and their quote, "sexually deprived spouses," has been pretty much exhausted. We know what was said. And as evidence thus far shows, Holly does not plan on retracting her comment. I was about to write that she hasn't shown any regret, but I went to check her Facebook page to see some of the latest things she had to say. I was a bit surprised. This is what I found:

Holly Hill:

"Why should being with someone for the rest of your life be about crossing your legs and controlling urges? There's times in people's lives when they don't want to go into the bedroom, like if a lady has a baby or if she has endometriosis or if a man has a particularly stressful job, so if your partner is not 'in the mood' why on earth shouldn't the other person be able to still engage in those types of behaviours? (Holly Hill, Nova 96.9, 30.11.11)
The above quote generated so many vicious verbal assaults the world was dumbfounded. I lashed back once (I’m human). I believe women are their own worst enemies. Prove me wrong. One apology from me would require many from you, so let's replace the bad with the good instead. From now on, for every insightful tip posted here on how to cope with either Endo or female bullying, I will donate a dollar from every ebook I sell to these combined causes. Let’s learn to be the best women we can be."
Now, I've got to say that as far as apologies go, this does not seem the most sincere in some respects, but very meaningful in other ways. She's making it clear that she does not personally see fault with what she said, and is not going to retract anything about it. In that way, there seems to be no apology. But her actions support that there may be an inkling of regret. She promises to donate money to endometriosis in some way or form.

This is what Holly is doing from this experience. Despite her continued belief that partners of endometriosis sufferers should not have to 'control their urges' she at least has acknowledged that endometriosis is not the casual problem she made it out to be in her interview. One can only hope this also means she will no longer use endometriosis as a tool for promoting her ideals.

In my opinion, it's not a glorious apology (more of a lack of apology), but I'm grateful for the effort. It shows respect for other women and desire to maintain a polite disagreement, rather than a hostile war (although I'm not sure it's possible). Although I did feel that labeling every women who disagreed with her as 'vicious' was wrong. I saw angry posts, but I saw a lot of civil ones too. Many women showed a lot of class, and it seemed like because of their civility, they were ignored. Who knows? I eventually will post my way of coping with endo, but I need to wait a little while longer for my anger to diffuse. I need to accept that this apology (the small effort already surprising I admit) is as much as we're gonna get. But that's going to take me a little more time.


More important (I believe) than what Holly plans to do, is what women with endometriosis and their loved ones plan to do. This 'dark' chapter of endometriosis awareness/treatment is a prime example of the lack of understanding by the general population. It sort of knocked me in the stomach, to think someone could be callous about endometriosis, and how they could be so blind about a disease they know enough about to name. Meaning, she knew endometriosis affected sex lives, without having any idea of why, how, and how people cope. To me, this said that people who knew the name were not getting adequate education about what the disease entailed. It was a wake up call. (However, let me make this clear--this does NOT make Holly responsible for my actions. They are ultimately up to me and my anger over her comments motivated me, not her comments. I tried to find the comment she made about her actions leading to the cure of endometriosis, but it seems she deleted it. At least she realized it was bang out of order) Correction: She did not take the comment down, or at least she might have only hidden it. Here it is: Holly Hill: "These pages are going to be the testimony that gets endometriosis cured..."

I love how many women with endometriosis have used this as an opportunity to educate others about the disease. It's a shocking enough occurrence to grab people's attention, and then you can lead into about what endometriosis is REALLY about. It gave me conversational opportunity with at least three people who, prior to this, knew little about the disease. Because although people who really care about these diseases or me will read this blog, there are many more who won't. So having another opportunity to educate was great. Additionally, there have been many women on Facebook who have encouraged others to use this as an educational opportunity. I saw more "fight like a girl" slogans than I can ever remember, and saw a lot of Facebook status's focused on educating about endo! It was amazing! Women (and men) are rallying together, stoked by anger, but channeling it into positive action. It has been an inspirational week for me.

Not only has this been an educational opportunity, but it's been an excellent catalyst for mutual support. Women have been sharing their backgrounds, sharing their stories, sharing their struggles, and other women rushed in with words of encouragement. I've made at least ten new endometriosis friends and I have felt less alone in this past week than I have felt in a long time. Women have been making it clear, for each other, that we are not suffering alone and that we are completely worthy of loving/supportive partners BECAUSE of our disease. Many women with endometriosis have at one time (at least) felt inadequate for a fulfilling romantic relationship because of this disease. We know that's not true, but sometimes we fear it is. But the truth is that the struggle of endometriosis can make you into a strong, wonderful person; one who is worthy of quality relationships because of the pain. And this week, and the stories it's generated, has been an excellent reminder of that.
For me personally, these events have motivated me to not only be more open about my struggles, but to look for ways to help everyone with this disease. One way I've gone about this is blogging, hopefully putting words to feelings and frustrations that many people are feeling over this. More meaningful, I think, is I'm using some personal skills to fund research. I am an excellent baker and am good at making both traditional and gluten free baked goods! So, I am opening orders with friends for baked goods, and donating all the proceeds to endometriosis research. This frustration creates energy for me, and I want to channel that energy into something that can make a difference.

I've seen other women using this as an opportunity to raise funds for endometriosis. One woman has an entire company/line of products dedicated to endometriosis awareness. Look at some of their endometriosis pictures here: http://www.facebook.com/OSLpics. Not only do the products educate about endometriosis, but her proceeds are dedicated towards endometriosis awareness/research. Other women are donating personal funds as a way to combat the ignorance/hate they feel Holy has spread.

And now, as a full day has passed since I read Holly's statement about what she said, I can share my calm, collected thoughts. Holly has not issued an apology. In my opinion, she is trying to prevent what she said from negatively affecting book sales. However, there is no apology in what she said and she has turned this around into her 'being the victim'. Unfortunately, I believe she honestly feels victimized in this situation and that she said nothing deserving of backlash. She's not sorry for what she said and probably never will be.

But you know what? I don't care. I'm moving on. I'm going to dedicate more of my time to stopping ignorance like this, so that if anything like this ever happens again, there will be no excuse for it (not that there is--but I can't say that before this, I've done enough to prevent things like this being said). I want people besides those immediately affected by endometriosis to care when awful things like this are said. And the only way that is going to happen, is if those afflicted work to spread education, hope, and awareness.

Please, post any thoughts or feelings you have on this. What are you doing to spread awareness? Do you have plans for raising funds? What about those without the disease, have anything your friends or family done helped to influence your views on it? Let's share this, motivate each other, and make a difference!
Here are links to some more endo blogs related to this:

http://endometriosismylifewithyou.blogspot.com/
http://coocamungas.blogspot.com/2011/12/bright-and-vibrant.html?spref=fb

4 comments:

  1. again my direct thoughts. lol. and probably many othersss! thank you! It's strange because about 2 weeks ago I was feeling so lonely (I have had to move from the town I was in and be closer to family), and it has been so empowering to realize there are a lot of women who get me! also it makes me not want to be so shy about endo! anyways really enjoy your insightful posts!

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    Replies
    1. And if you ever feel lonely feel free to contact me ;)

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    2. For sure! I am glad we get the opportunity to work on the site! :)

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  2. There are lots of endo women out there, and it really is an amazing, supportive community :). Thanks for your thoughtful comments and motivating messages!

    ReplyDelete

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.