Tuesday, December 13, 2011

Those who talk

I know I said I would do a part three post on Holly Hill's comments about endometriosis, and I fully intend to do this. I did not tell a lie! However, before I do that post, I wanted to do this post. Mostly because I think something that is more important than a 'prominent figure' spreading biased, negative information about endometriosis, are those real celebrities spreading truth, hope, and awareness. Women who are in places of focus/prominence and are willing to be open about their struggles with endometriosis.

There are a lot of negative stigmas about being unhealthy in modern society. I believe it is because it makes people nervous, when someone they know gets sick through no fault of their own. It makes them think, "could this happen to me?" which makes them uncomfortable. So instead they negatively label the sick person, to distance themselves from that possibility. Whether it's conscious or unconscious, they blame that person in some way. They let something go, they contracted it, they lived unhealthily. Doing some research today, I found some pretty bogus myths about endometriosis. Things like it being sexually contracted (like an STD) or caused by an infection that the woman let go. Here are the facts: endometriosis is caused by a combination of hereditary and environmental factors, both known and unknown, and there is nothing a woman can do to prevent coming down with it. There are medical and homeopathic options to help manage the disease, but she is NOT responsible for causing it.

Because of these stigmas and myths, or possibly adding to these stigmas/myths, many women with endometriosis do not feel comfortable publicly acknowledging the disease. They fear negative consequences. They do not want to be labeled sick. 10% of women are thought to have endometriosis--it is the leading cause of infertility and numbers are increasing. However, you don't hear of many prominent women having it, do you? Perhaps it's because it's harder for women with endometriosis to rise to prominence--it's difficult to be active in social/work spheres when you feel unbearable pain at least a third of the time. But I believe there are many women with endometriosis with celebrity status. We just don't know it.

In 2009, Padma Lakshmi co-found the Endometriosis Foundation of America. This famous, well accomplished, beautiful woman was diagnosed with endometriosis and made it her mission to help other women succeed with diagnosing and treating the disease early. She is helping raise awareness and funds for this disease, helping women receive information and treatment for their disease. Of course there are many others involved with this foundation besides this famous model, but her celebrity status helps bring much needed attention to the disease. She has invited other famous individuals on her mission to educate (such as Whoopi Goldberg, who was diagnosed and treated early in life) and she and other women are doing much to teach about this disease. (Check out her website here)

Why aren't there more women like Padma? Lance Armstrong turned his battle against prostate cancer into one of the most successful cancer awareness/fundraising companies ever. Everyone is familiar with the name Livestrong. Almost everyone is familiar with cancer, diabetes, hepatitis, heart disease, asthma--why are so many unaware about endometriosis? I once began to explain my disease to a pre-med friend of mine, and he interjected, "We studied endometriosis in one of my courses. My professor said it was like living with cancer. He made it sound awful." It was a relief not to have to explain myself (I needed help moving because I was flairing and could not lift because of pain and cysts), but more importantly, it was awesome to hear a male friend both aware and telling me a male professor was likening endometriosis to cancer. Because although usually explaining endometriosis as the 'hormonal cousin of cancer' is an easy explanation for many of my friends, sometimes I get sarcastic smirks. Or admonitions of being dramatic. Though after being on a chemo-class drug, suffering many cysts and a big fibroid tumor, having multiple surgeries to excise migrating tissue--I don't feel dramatic. Yes, I don't have to worry about dying tomorrow, and I am grateful for that, but I am scared for every surgery, been on dangerous treatments, and I've had my life on pause for almost two years because of this disease. I've had to watch all my friends graduate college while I stay home in bed. I've wasted hundreds and hundreds of dollars on classes I couldn't finish. And I need to learn how to live with this disease--I will never cure it. I will never be completely healthy. In that way, yes, I feel like endometriosis has taken my life away.

And I know there are many other women who feel like that. So why is it hard to be public and fight for a better life? There are strong women who do fight. Women like Karen Duffy; TV personality and MTV VJ, Karen Duffy teamed up with the National Women's Health Resource Center to make public service announcements (after she was diagnosed with endometriosis in 1998). Duffy's biggest aim is to educate women on how to differentiate from typical period pain and the intolerable pain of endometriosis cramps. One of the biggest hurdles in women getting the treatment they need is the dismissing of endometriosis pain as 'normal cramps'. Affected women, their friends, their doctors--they are all guilty of doing this. Early detection of endometriosis is crucial for preventing further development of the disease, and the current median delay in diagnosis of endometriosis (meaning time from development of the disease to medical diagnosis) is 9 years. NINE YEARS. Duffy is making an invaluable contribution by trying to educate women and decrease this median. But to be honest, I don't think it's enough.

She's only one person. One actress. She does try to help, and I'm not trying to take anything away from her. I think any work she can contribute is great. But I wish more women with prominent connections would speak out on behalf of endometriosis. Or even prominent figures with spouses/loved ones with endometriosis. But it's not happening, and probably because of negative stigmas against poor health. I think it's odd that celebrities are so willing to share the most intimate details of their life, but not about their health. Especially when it could benefit others.

There are other women with some prominence that have announced they suffer from endometriosis but have not made contributions to raising awareness/funds, other than by drawing attention with their diagnosis. Women like Julianne Hough and Lacey Schwimmer from Dancing with the Stars,. That they admit it helps, but maybe they could help more. I've heard rumors that Dolly Parton had it, but this has not been confirmed. Think what she could do for the endo community!

I know they are only human, and it's awful enough that they're suffering, I'm not trying to criticize. I'm trying to figure out what I can do to help change the current situation. For one, I'm pretty public about my endometriosis and how it affects my life. Not in a negative way (I hope!) but in a way to raise awareness. I think it's when everyday common women become open about it, it makes it easier for everyone. Think about it, 20 years ago (and beyond) women did not talk about this really. When Marilyn Monroe suffered, she developed drug dependency (for relief) and it ruined her marriage. She could do nothing for herself or for others. It was something to be suffered in silence. That has changed so very much. And it is continuing to change. And I am proud of anything I can contribute to that change. No matter how small. It's something I am constantly working on and I hope someday I can make a difference.

Being sick is not something to be embarrassed about. It helps me tremendously to be open about it, and I've found that if I am brave enough to talk about it, other women in my company come forward too. Maybe if more celebrities come forward, we can get some much needed public awareness about this disease. Celebrities don't do the research, they aren't the doctors who treat us or the researchers who test and develop new medications. But they have more power than the average person to raise awareness and funds for this research. They are no more important than the average endometriosis sufferer, but they can bring help that the average one cannot.

So here is my challenge: Teach one person a week about endometriosis. A daughter, a sister, a cousin, a friend, a teacher, a coworker--teach and spread education. You never know who you may help. You could help a woman avoid 9 years of suffering. You could provide much needed education to a friend whose sister is suffering. It could be a friend of a friend of a friend :). That's my new goal. Who knows what change it may effect or who's ears it may reach.

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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.