Since 1982, I have lived with endometriosis. It took me 10 years to finally have a laparoscopy and be properly diagnosed with it but I have lived with it for 28 years now. It is important to me to begin by saying that I have met some of the most caring, compassionate, supportive, loving women in the endometriosis patient community (online and off). In the last two years online and in the years I participated in local (in person) endometriosis support groups (1992-2008), I have had the good fortune of meeting some of the most amazing people! It is important to me to note this up front because I am about to write what may end up being a controversial post. My purpose with this post is definitely not to upset anyone but to draw attention to a matter that I believe needs attention and analysis. So, I will be sharing my opinions here. In my daily activities online, I perceive an imbalance between endometriosis patient advocacy work and patient advocacy work for other chronic illnesses.
Before I proceed, I also want to be clear that I ordinarily am not a fan of comparing one illness to another or comparing one patient to another. Everyone is unique and different. At the same time, I believe that comparing and contrasting can sometimes be a useful means of getting context. Sometimes, comparison is helpful because it shines a light on differences that may indicate where there is room for improvement. So, please hold your hate mail and understand that I am writing this post (which I have been mulling around in my mind for many months) because I LOVE my fellow endometriosis patients very much.
Over many months, I have observed a large imbalance between the level of patient advocacy work done on illnesses such as multiple chemical sensitivity (MCS) and ME/CFS and the patient advocacy work done by endometriosis patients. MCS and ME/CFS patients I encounter online daily are, as a general rule, more likely to engage in letter-writing campaigns, petition signing, and information sharing than endometriosis patients. These patients are very ill… just like endometriosis patients. These patients have poorly understood conditions… just like endometriosis patients. These patients are faced with many frustrations and challenges… just like endometriosis patients. However, for whatever reason, MCS and ME/CFS patients are more tightly organized in their advocacy (from my perception) despite the fact that many of them are ill enough to be housebound or even bed bound.
Let me give one example. I posted this XMRV retrovirus petition recently (a petition that many ME/CFS patients are interested in):
Graphic no longer exists
At the time I posted it (very recently), I believe it had about 40 signatures. It now has 893 signatures.
Our endometriosis petition was started in 2008. While it is wonderful that we have 633 signatures (many with passionate comments attached), I am left wondering why we don’t have far more signatures than that…
An estimated 89 MILLION women and girls worldwide have endometriosis!
“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility”, as per Ohio State University Medical Center.
Now, my blog has far more endometriosis readers than ME/CFS readers. Yes, of course, the XMRV petition is posted all over the Internet. There again, though, endometriosis patients who wish to post the endometriosis petition can post it widely too. Many people reading this post already have posted the endometriosis petition badge on their sites. The thing is that if endometriosis patients were as well organized as ME/CFS patients or MCS patients, I firmly believe that the petition could be posted on far more sites and could have garnered far more signatures by now.
As I’ve watched the number of signatures on the XMRV petition multiplying exponentially, I could not help but wonder why I sometimes feel like I’m pulling teeth to garner signatures on the endometriosis awareness petition. Many people have worked hard to get the word out about that endometriosis petition and I’m not trying to take anything away from the fact that we’ve gotten 633 signatures to date. At the same time, I can’t help thinking that we should have more signatures than we do. We’re talking about a condition that is “more common than AIDS and more common than cancer”! I just don’t think enough people are seeing the petition. This is where the teamwork and organization comes into play. I hate to say it but my perception is that endometriosis patients are not as organized as some other patient populations. I’ve reached this conclusion after what I have seen online in the past two years.
To be clear… I would never, ever want anyone to feel that I am criticizing endometriosis patients in any way, shape, or form. Endometriosis patients have numerous hurdles and challenges because of their illness. Many endometriosis patients have co-existing illnesses such as fibromyalgia, interstitial cystitis, or irritable bowel syndrome (IBS)… to name a few. I understand this because I have all of the above (and then some) myself.
My goal with this post is to shine a spotlight on what I view as an opportunity… for endometriosis patients to engage in more teamwork, increased networking with fellow patients, and more information sharing. Having participated in endometriosis support group meetings (monthly, in person) from 1992-2008, I have met a great number of endometriosis patients in person. In blogging since 2008, I have “met” too many endometriosis patients to count online. My goal is to encourage endometriosis patients to think about whether there is anything they can do for the endometriosis cause that they haven’t.
To be sure, I don’t have a magic list of things people can do to take action. I am just including a few suggestions.
Five ways to help the endometriosis cause:
1) Please sign the endometriosis petition if you haven’t already. If you have already signed, why not ask your friends and loved ones to sign it too? There is strength in numbers. Signatures accompanied by personal comments are particularly effective.
2) Post the petition badge – such as the blue one above – on your site if you have a website or blog. This will give your readers the opportunity to support the endometriosis cause. (If you are interested in obtaining the code for the blue petition badge – which automatically counts up every time someone signs it – please simply leave a comment on this post and I’ll be happy to email the code to you. Then it’s just a quick copy/paste to have the same petition badge posted on your site)!
3) Don’t have a site? No problem! Why not share this link to the petition on your Facebook page, on Twitter, or in an email to friends and loved ones who might love a way to support you by supporting the endometriosis cause? (Loved ones are often grateful for a tangible way to help endometriosis patients… since this illness can cause feelings of helplessness).
4) If you haven’t already done so, check out this post: Endometriosis Advocacy and the Media (Re-post). It explains a case where we put the petition to use in pressuring the media to correct errors that were printed about endometriosis – in a syndicated column that was written by a gynecologist! Our voices were heard by the editorial staff of this newspaper!
5) Last but most certainly not least, please contact Endochick (see email address below) regarding the endometriosis research she is conducting as part of her graduate school studies in pursuit of a Patient Safety degree. She cares very deeply about endometriosis and is working to improve communication between endometriosis patients and physicians, among other things.
If interested in the endometriosis research mentioned in the post above, please e-mail:
Please remove the space between endochick and 80 when e-mailing and put RESEARCH in the subject line.
This is just a very short list that may serve as a jumping off point. I don’t have any magic answers for how endometriosis patients can get better organized and become more involved in advocacy work on behalf of the endometriosis cause (and the 89 million patients worldwide who have endometriosis). I realize that many endometriosis patients are too sick, busy, and tired to become tireless advocates for endometriosis.
I also strongly believe that every little bit helps.
If enough endometriosis patients join forces and work together as a team, endometriosis advocates could become every bit as effective as the multiple chemical sensitivity (MCS) advocates and ME/CFS advocates I encounter online every day. When I see friends online who are multiple chemical sensitivity (MCS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients (many who are housebound or even bed bound) who are writing letters, calling their legislators, signing petitions, etc., I cannot help but wonder why there is so much less of this activism with endometriosis patients.
Helping the cause doesn’t necessarily have to be time-consuming! Signing the petition takes just moments. Posting it on a blog takes moments too.
Contacting Endochick is fast and easy!
Again, here is her email address:
Endochick’s e-mail “endochick firstname.lastname@example.org” (just remove the space between endochick and 80 when e-mailing)
I strongly encourage endometriosis patients to contact her regarding her endometriosis research.
When I picked the title for this blog post, I did not mean to upset anyone. I named it “Endometriosis Apathy?” because I KNOW how passionate endometriosis patients are but I don’t see the same level of patient advocacy for endometriosis as for some other chronic illnesses. Actions speak louder than words. I have heard, in words, how utterly devastating endometriosis is for patients. I would love to see the passionate words that have been expressed to me again and again turned into action on behalf of the endometriosis cause… and the 89 million patients who live with it.
Any one of us alone can be left feeling like we might as well be climbing mountains when we ponder the idea of doing advocacy work for endometriosis. It’s true that many of us are not physically capable of climbing mountains in the literal sense. However, I believe that working together enables us to “climb mountains”.
By getting more tightly organized as a team of passionate advocates, we CAN make a difference. Let’s do it!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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