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Endometriosis Apathy?

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.

That said, let me start by directing you to comments I exchanged with Jenn in the blog comments section for this post: MCS Letter To Oprah. See comments 5-8 for our exchange.

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.

GoPetition

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:

“endochick 80@gmail.com”

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 80@gmail.com” (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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Reading: Endometriosis Apathy?

21 comments

1 Liz Hamil l ScottNo Gravatar { 08.01.10 at 10:28 pm }

No hate mail here!

My guess as to why there’s so much less activism for endo than for MCS and ME/CFS–because endo affects our reproductive systems. Down through history, women have been taught, encouraged, coerced, and threatened…we are not not NOT supposed to talk about our girly bits. We’re supposed to feel embarassment, shame, and even degredation if we utter the words vagina, uterus, or ovaries in public. Polite women don’t say “pelvic pain” out loud in restaurants!

This is such an ingrained behavior…even on the online support groups I frequent, I see it. There are so many apologies for TMI, for “too graphic,” even “too gross.”

Until we’re able to overcome the pervasive and misplaced sense of privacy and shame that comes with discussing our uterine linings, advocacy for endometriosis will lag behind organized support for research on more socially acceptable diseases.

The good news: the Susan G. Komen foundation has managed to make “breast cancer” into a nondirty phrase. In time, uterus will follow. For now, the best thing we can do is to keep speaking up in public, both on the Internet and out in the world.

I’ll sign the petition and put it up on my various sites and accounts. Down with Endo!!!
.-= Liz Hamil l Scott´s last blog ..Travel Advice for the Less Mobile Traveler =-.

2 EndochickNo Gravatar { 08.01.10 at 10:34 pm }

Thank you so much Jeanne for all the help you provide me and others with chronic illness. Endometriosis is more than just an inconvenience in our lives. This disease can be extremely painful and terribly isolating. I hear from women all the time who say they lay on their couches crying, feeling alone and desperate, and that their family/friends/loved one do not understand them. They get labeled “hypochondriac” by physicians and family, and this leads to more isolation and depression. Just from the little research I’ve collected so far, depression – at some point in the disease process – has been prevelant in roughly 70% of those surveyed. And a large majority has had to resort to “doctor shopping” just to get a diagnostic lap! These statistics are absurd. In this day and age, with the technological advances modern medicine has, that women are still labeled as hysterical and weak and “a problem” because they are suffering from endometriosis – a disease without external battle scars.
.-= Endochick´s last blog ..I’m still here… sort of =-.

3 JeanneNo Gravatar { 08.02.10 at 1:08 am }

Liz,

Well, I’m always happy to have dodged the “hate mail” bullet. ;)

I absolutely agree with you that it is more difficult for people to speak up publicly about an illness affecting the reproductive system. Without a doubt! You are correct that women – and girls – have been conditioned, generally speaking, NOT to talk about such “private matters”. All of the etiquette about it being somehow “improper” to discuss these medical symptoms enrages me because the silence leads to unnecessary or increased suffering for so many patients… and sometimes delayed diagnosis too!

It is true that women/girls have been “trained” in many cases to feel embarrassed when there is nothing to be ashamed of. It’s not like there is some comparable “secret code” that discourages men/boys from talking openly and honestly about their bodies.

Well, I guess I am a rude woman because heaven only knows if I am out to lunch with a fellow endo patient… I will say “pelvic pain” out loud without a second thought. ;) Granted, I don’t go shouting it at top volume throughout the restaurant. However, I will definitely say it. Hmm. It must be I have failed the social graces test for dining out.

It is ingrained behavior… I believe most women have been socialized from a young age about this. I think that often those of us who dare to be explicit regarding various symptoms will tend to lapse into coding it as TMI (or give it a “graphic” or “gross” warning) for fear of others’ reactions.

There is a lot of shaming. Very true. It is pervasive and I agree that it’s holding us back from more effectively dealing with the problems at hand. Women I know used to attend local endo support meetings (for the first time) having never, ever spoken about their symptoms (except possibly to their doctor but in limited fashion). They came right out and said they were, “embarrassed” or “ashamed”. At this point, I would smile and politely ask them if they’d be ashamed of having diabetes. They’d look puzzled and say, “no”. I’d say, “well, you have an illness called endometriosis. Like diabetes, it’s chronic and it can be serious. Try not to be embarrassed… You didn’t ask for this illness and you have NOTHING to be embarrassed about”.

I agree wholeheartedly that if we cannot even have meaningful conversations about these issues, endometriosis advocacy will lag behind.

Privacy is one thing. Secrecy and shame are a different story. There is nothing to be ashamed of!

In regard to it being more acceptable to dare utter phrases such as “breast cancer” now than it was years ago, it certainly has become de-stigmatized to the point where people are more comfortable discussing breast cancer than, say, “uterus” or “period”. Without a doubt. Yes, we need to de-stigmatize endo.

However, I’m afraid I can’t share in enthusiasm about the Susan G. Komen Foundation. I have learned a great deal about them in the last couple of years that has been disillusioning to say the least. Let me try to give some background to explain what I mean…

The first time I learned about pinkwashing was from my friend Susie Collins, a breast cancer survivor, of The Canary Report. She wrote this post (Why I boycott Breast Cancer Awareness Month) and it was the beginning of me understanding the concept of “pinkwashing”.

If you read Susie’s blog comment back to me, you’ll see this:

“Not much of the money from pink ribbon campaigns goes to research, and the research is generally about Big Pharma anyway, not addressing the cause. That’s my beef. Also, the origin of the pink ribbon visual, although usually attributed to Estee Lauder VP Evelyn Lauder, was ripped off from a woman, Charlotte Hayley, a breast cancer survivor, who was making peach colored ribbons. She sold them with a card saying, “The National Cancer Institute annual budget is 1.8 billion US Dollars, and only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.” Lauder tried to cut a deal with Hayley to use her concept, but she refused saying it was too commercial. So Lauder’s lawyers came up with the idea to change the color to pink, and rest is history: a pink ribbon campaign, built around October as Breast Cancer Awareness Month, sponsored by companies who make products containing toxic chemicals”.

A few months back, there was quite an uproar regarding an alliance formed between Susan G. Komen Foundation and Kentucky Fried Chicken:

Susan G. and KFC: An Unholy Alliance

My friend Susie wrote this post:

KFC and Susan G. Komen launch huge pinkwashing campaign

I signed petitions, commented on Susie’s post, mentioned it on my blog, posted information about this pinkwashing campaign on my Facebook wall, etc.

I follow Breast Cancer Action on Facebook here: Breast Cancer Action Facebook Page. I love their Think Before You Pink campaign.

Finally, ecologist, author, and cancer survivor, Sandra Steingraber, Ph.D. wrote this article that really hits home the hypocrisy of the Susan G. Komen Foundation in forming an alliance with KFC (which has prompted a significant outcry) while the Foundation is saying nothing about the pesticide atrazine:

Escape from the Heartland – Atrazine, Susan G. Komen, and KFC

While I am just as happy as you are that people feel freer to discuss topics like breast cancer openly these days, I have some significant issues with the Susan G. Komen Foundation. (The fact that they partnered with KFC also bothered me because KFC has a reputation for not treating its chickens humanely… but I digress).

It is crucial for patients with gynecological and/or pelvic pain conditions such as endometriosis, interstitial cystitis, irritable bowel syndrome, vulvodynia/vestibulitis, pelvic congestion syndrome (all of which I personally have) and other issues (such as the probable adenomyosis I have… and that I know you had mentioned having it yourself) to feel comfortable talking openly about their health conditions!

The days of shame and embarrassment should be a thing of the past. No man hesitates to talk openly about prostate cancer. Why in the heck should women be fearful or embarrassed about discussing their illnesses (including ones affecting reproductive organs)?

Obviously, sexism factors into this equation. One could argue that I’m wrong on that because of the fact that breast cancer is discussed so openly now. However, MANY women’s health issues are notoriously under-funded… to ridiculous proportions!! So, this is about all sorts of issues.

I agree that the day will arrive when the word “uterus” won’t freak people out so much. That day can’t come soon enough for me. All of the secrecy disguised as “privacy” isn’t helping patients any! I’ve met too many patients who went a decade or more without discussing symptoms much (or at all!) with anyone because they grew up in homes where it was not considered “polite conversation”… or the topics raised simply made parents uncomfortable.

I agree that speaking up publicly will increase awareness and, eventually, help to de-stigmatize! ;)

Jeanne

P.S. I’ll get that code right out to you for the endo petition badge!! Thanks for signing!! ;)

4 JeanneNo Gravatar { 08.02.10 at 1:34 am }

Liz,

I just sent you the code for the petition button. Thank you for sharing the petition!!

Jeanne

5 JeanneNo Gravatar { 08.02.10 at 1:53 am }

Endochick,

Thank you! You are a huge support to me and many others! Yes, endometriosis is far more than an “inconvenience”. The pain can be absolutely debilitating. The isolation is all-too-common.

Too many women are spending too much time crying and feeling alone/desperate. There is so much room for improvement! To have family/friends not understand it compounds the problem significantly. It is far too common for endo patients to get labeled “hypochondriacs” as you alluded to. This really does make matters much worse.

Depression is extremely common for people who are chronically ill. I am not surprised at the staggering statistics you are finding simply because I have known SO many people with both endo and depression… and because my blog gets daily traffic on the topic of “endometriosis and suicide”. :(

Yes, the need to “doctor shop” is a common one for endo patients. It’s totally ridiculous!

If you look at the root word of “hysterical”, it comes from the Greek “hustera” (womb). One definition states, “A neurosis marked by a physical ailment with no organic cause, such as sleepwalking or amnesia” (source: American Heritage dictionary). So, we even have the dictionary working against us! Heck, the root word for “womb” is synonymous with neurotic, non-organically caused illness! Yes, the stigma is alive and well! Clearly, endometriosis is one invisible illness that can cause devastating results.

So, let’s go get ‘em!

Jeanne

6 AmandaNo Gravatar { 08.02.10 at 7:10 am }

Wow, what a post! And by that I mean that it is inspiring, not hate-mail inducing ;) You always know how to get a girl thinking, Jeanne!

I agree with Liz on the whole idea that Endo patients are probably not as good at raising awareness due to the stigma of the condition… heck, even though I speak quite freely about mine, I am more than aware that I need to find a balance between talking about it openly and pushing people too far out of their comfort zone. By this I mean that if I am to raise awareness of Endo and the plight of its sufferers, then I need to ensure that I don’t scare potential readers/listeners away by bombarding them too much. I specifically chose not to have an “Endo blog” because I felt that I would only attract fellow sufferers to it, and whilst I love the support that this provides, I wanted to be able to use a skill I have (i.e. writing) to create awareness of it on a larger scale. By trying to find a balance between how much I write about Endo on my blog, I have managed to put up posts that are being read by non-sufferers as well. It is a difficult balance to find though because I would love to write so many more posts about what I feel is important to share, but in order to keep bringing a wide range of readers to my blog I have to ensure that the content is varied and catches people’s eyes. You know I recently started “Friday Focus” posts and that I have my “It’s End-O, not ‘The End’” posts, but I am constantly wondering if this is really enough. From our chats off-the-blog, you know that I want to spread awareness more, but I find the balance difficult. So I can only imagine how much harder it is for someone who is *ashamed* of their Endo and doesn’t feel able to mention it at all.

Your post has got me thinking though about how I can do more, and I shall chat with you at some point about some ideas I’ve been having: every little helps, remember… we *will* get there!

Thank you, Jeanne, once again for being so open and honest with your readers… you inspire us all xx
.-= Amanda´s last blog ..Friday Focus – Green Weddings =-.

7 Matthew SmithNo Gravatar { 08.02.10 at 9:09 am }

I think the reason there is a lot of enthusiasm about ME advocacy recently (more so than for endo or any other chronic condition) is that it’s had the twin publicity boost of the XMRV discovery and a well-publicised story about severe ME in the UK (Lynn Gilderdale). A lot of people have woken up to the ME situation in the UK because of that case, and some have reported that people treat them differently now because they know it’s a “real illness”. When Emily Collingridge (the author of the Severe ME book I mentioned here in May) was admitted to hospital recently, her father reported on Facebook that the nurses were very interested in her book; in the past, ME sufferers often expected, and got, dismissive treatment.

The people who are the loudest advocates for ME are not usually the bed-bound ones; they are more likely to be the carers or those who have made some degree of recovery even if they once were bedridden (Jane Colby is a good example). Of those who are still bedridden, a lot of them put all their energies into one thing, be it campaigning or blogging or writing a book, and don’t do much else as they spend most of their time resting. I’ve written a few emails to the author of a well-known ME website and usually (and especially if the content is in any way complicated) I just get no reply at all. The author is just too ill.

So, I don’t think it’s apathy about endometriosis although perhaps men are less likely to advocate for it because it’s an inherently female illness. It’s a case of ME getting a much-needed boost.

8 Jenny H.No Gravatar { 08.02.10 at 12:17 pm }

No hate mail here either…I agree that endo patients aren’t as vocal as they could be. I’m not really sure why either…and over here in Quebec as an anglophone, I have a lot of trouble connecting with other endo gals…I mostly hear of friends of friends/coworkers who have it but very few people I actually know. And of the ones I have met, they don’t seem as bothered by it as I am. Even my own mother because she had my brother and I so young…she never knew it could be passed on to her daughter(me) or more importantly that it could cause infertility since she had kids. My parents recently admitted that if they’d known these things (one more reason to spread the word right!?!) they probably would have done more to get me a diagnosis early on.

Is it possible that there are just too many endometriosis patients who aren’t even aware of the severity of their own condition and therefore don’t feel a need to advocate for it(sort of a catch22…no information out there means people aren’t informed and lack or information doesn’t cause patients to feel a need to spread awareness)?
For example my friend’s sister “apparently” had mild endo when she was in her early 20s (not sure if she actually had a lap to diagnosis it) but then got pregnant twice and had NO symptoms for many many years (I heard she may be having a few symptoms again…but it’s been over 12 years that she’s had NO pain/issue). She obviously wouldn’t think that endometriosis is that big a deal since it didn’t affect her life in the way it has mine or yours. I’m sure she’s not alone.

The same is true of a woman I worked with this year. She had no partner and was getting older so she decided to have IVF with a donor. They wanted to test her for endo and found mild endo but they removed it. She got pregnant with twins and had no issues of pain/infertility therefore she talked about it like it’s nothing!!! This hurt me but I didn’t want to start drama at work…

I don’t really know if what I’m saying makes sense…I’m just highlighting my experiences with endo outside of the online world…I think that if ALL patients experienced the pain and other issues that we do, they may be more vocal and take it more seriously…but unfortunately it’s not the case. Maybe because the symptoms of those other diseases you mentioned are more equal across the population (I’m assuming…as I don’t actually know) they have less trouble finding others to fight for awareness?!?!
.-= Jenny H.´s last blog ..Day 1- My favourite song =-.

9 Jenny H.No Gravatar { 08.02.10 at 12:19 pm }

just to clarify…when i say these women downplayed it…it’s because they wrongly assumed they were cured of it once it was removed…and therefore they tell others that it can be removed and/or cured…
.-= Jenny H.´s last blog ..Day 1- My favourite song =-.

10 JennNo Gravatar { 08.02.10 at 12:37 pm }

No hate mail here either, in fact, I’m going to call mine love mail!

Thank you for posting about this topic. I think it is soooo important to draw attention to this subject.

I was so happy when you shared with me previously how the petition helped fight endo misinformation in the media. I think this has to be a large focus of our efforts. There are still way too many myths circulating out there and not nearly enough knowledge about the truths and facts. I can speak from experience and say that it is not easy to find somewhere or someone to turn to when diagnosed and/or looking for endo answers.

I agree that part of the problem is the still-taboo subject of women’s menstruation. This is something else we can work on together. We can start in our homes and families by talking openly and honestly with young girls and adolescents. Imagine a generation of young women who refuse to abide by this ridiculousness! (I can see their smiling faces now!) We can also make a difference for adults, just by being honest and open about our endo knowledge and sharing it with others.

I hope this post generates increased support for the petition and encourages endo patients to think of ways to take action in their lives. I have posted the endo petition link on my page, thanks to you, and it is a very quick and simple (and powerful) thing to do!

Endo research has so far to go and it seems it will only happen if we push and fight for it. I am disgusted by how many GYNOS are uninformed, let alone the general population.

I’m on board, let’s go get ‘em!!

Thanks Jeanne!

11 JeanneNo Gravatar { 08.02.10 at 1:19 pm }

Readers,

I am enjoying reading through all of your comments and I will be replying to them as soon as I am able. In the meantime, I wanted to post a video of interest:

Amanda from Amanda’s Patch just posted a video called “Endometriosis Facts”. I thought I’d post the link here so readers who wish to do so can see it.

Amanda has been incorporating endometriosis awareness into her new online business Amanda’s Patch. I hope you’ll check out her video and her site! She has a section of her site that is devoted to endometriosis.

So, please check out Amanda’s passionate video for endometriosis awareness and take a peek at her new site… which is just beautiful.

Jeanne

12 DianeNo Gravatar { 08.02.10 at 3:20 pm }

Thanks for the post! I’ve gotten to where I don’t worry about the stigma of it, and I’ll share exactly why I’m not feeling well. I try not to be too “in your face” about it, but also to the point. This disease has affected my life in so many bad ways that I really don’t feel compelled to hide it anymore. If we have to be inundated with constant Cialis commercials, why should we hide endo?

13 JeanneNo Gravatar { 08.03.10 at 12:07 am }

Amanda:

Why, thank you for not sending me hate mail! ;) It doesn’t take much to get you thinking… seeing as your wheels are always turning. You don’t need any help from me there. Does your brilliant brain ever rest?

I agree with you and Liz that stigma is definitely a barrier facing those wishing to increase endometriosis awareness. I too feel there are certain situations where I need to find that balance because, as you alluded to, I am capable of pushing people out of their comfort zone (to a degree where I might do the endometriosis cause more harm than good if I insisted on talking about topics that a given individual simply isn’t interested in talking about. I have learned I have to choose my battles.

As you said, it is possible to “scare people away”. I’m very vocal about endometriosis and I’m certainly not timid about discussing it. At the same time, there have been times or situations in my life where I have not gotten into details that would/could, frankly, alienate people who might be supportive of the endometriosis cause to some degree on their own terms… if I let them decide what those terms are.

For me, my blog is a place where I can say what I feel needs to be said. In my case, I’m not worried about scaring people away here… because anyone likely to have an interest in my blog isn’t really going to be scared away by me talking about endometriosis (in whatever detail I see fit). I can see where your situation is different, though, in the aspect that attracting readers who do not have endometriosis (or necessarily any other chronic illness either) is important as you are working to build your online business. It is possible to “saturate” people with more information than they are ready for (or open to). So, I think the way you are handling it on your site is just right.

By the way, I would just like to take a moment to tell you again, Amanda, how beautifully your new site is unfolding and how awesome I think it is that you are setting aside time and space for the endometriosis cause on your site! I think incorporating your passion for endometriosis awareness into your new business venture is a win-win-win situation.

Your blog readers/online shop customers get to learn about endometriosis and how it has personally impacted you… Those readers/shoppers who do have endometriosis appreciate your activism on behalf of the endometriosis cause. In the meantime, you get the satisfaction of making a contribution to the endometriosis cause with the awareness you are generating. Win-win-win.

I was so pleased to see the endometriosis video you just made that I posted it (see above) in blog comments. I know you haven’t officially launched your YouTube channel quite yet but I couldn’t resist posting your endo awareness video on this thread. Perhaps someone reading this might like to subscribe to your YouTube channel. (If you click to see Amanda’s video above, you can link over to her YouTube channel for “Amanda’s Patch”.

Having had an “endo blog” (Jeanne’s Endo Blog) prior to Chronic Healing, I hear what you’re saying about attracting the audience you’re looking for. I write about far more than endometriosis. So, when I migrated to this blog, I purposely shed the “endo blog” phrase so that I could attract readers who can relate to the varied topics upon which I write (mainly chronic illness/pain… with some exceptions). I think it’s wonderful that you are using your writing skills to create awareness on a larger scale.

I agree that your method of balancing endometriosis with other topics has been wise and I think it will continue to attract all sorts of readers. I think you are balancing it beautifully. I think your new “Friday Focus” posts and your “It’s End-O, not ‘The End’” posts are great. As we discussed “off-the-blog” earlier, I think you are doing a fantastic job of spreading endometriosis awareness through multiple means and I am more concerned about you burning out than anything. (Hint, hint… we need you too much for you to burn out. So, try to resist overdoing things… for the good of the cause)! ;) You’re right that for people who are ashamed to even talk about endometriosis, engaging in advocacy work on it becomes all but impossible.

Keep up the good work! You are doing so much already for endometriosis awareness. Please don’t stress yourself out trying to pile on more and more. Your to-do list is very long. You’re only one person!

Yes, we will get there! Thank you for your kind words! xo

Matthew:

I agree that the XMRV publicity combined with other high profile cases in the media have resulted in more attention on ME/CFS than had previously been the case. I can only imagine that the Gilderdale court case did “wake people up”. What a very sad case!

On a brighter note, it’s good to hear that patients are reporting improvement in how they are being treated by people. While it’s incredibly sad that ME/CFS patients (or any patients) would ever be dis-believed to have their illness(es), it’s good that some people who might have scoffed before are now seeing it as a “real illness”. It’s sad that it had to take that tragic case (and others) to wake people up, though. It’s always a plus when health care practitioners are open to learning more and willing to admit that they don’t have all the answers.

No patients deserve dismissive treatment. In a perfect world, that would never happen. In the meantime, patient advocates and the organizations out there that are supposed to be helping them (don’t get me started) need to do what they can to improve conditions.

Yes, I have friends with ME/CFS who can read my typically long-winded emails at times… but who can’t cognitively process them at other times. It is incredibly frustrating for them when they can’t process what I’ve said and I have to try my best to keep it brief for this reason. (I’m not known for my brevity).

I don’t really think it’s “endometriosis apathy” either. (That was the reasoning behind the question mark in my post title). I agree that men are less likely to advocate for endo than MCS or ME/CFS. While men may have wives or girlfriends or sisters or mothers who have endo, they are not as likely to work for endo awareness as, say, a male patient who has MCS or ME/CFS.

I’m happy to see ME/CFS getting a much needed boost. ME/CFS patients have suffered terribly and it’s about time for some good news!

Jenny:

What? No hate mail from you either? Wow! I’m on a roll!

I’m sorry that very few people you actually know have endometriosis. Let me restate that. I’m not wishing for more people to have endo there. I just feel badly that you don’t have more in-person support. It doesn’t help that the ones you do know are not as severely affected as you… because that means they are far less likely to “get it” and be able to empathize with/support you.

My mother has endo too. She doesn’t “get it” either. She had my two sisters and me before even being diagnosed with it. Her symptoms were never like mine. She didn’t get diagnosed until she was 42. From age 13 to age 23, I went through holy hell thanks to endometriosis. (I love my parents dearly but I did not receive much-needed medical attention). The “taboo subject” business Liz mentioned was definitely a factor in my delayed diagnosis/lack of medical care for what turned out to be endo. I love my parents dearly but I don’t think they’ll ever “admit that I should have been diagnosed earlier on”. I just don’t see them ever coming out and saying such a thing.

There surely are endo patients who don’t understand their own condition well enough to “rise up” and demand change in the broken system that allows 9.9 years to be the average lag from onset of symptoms to diagnosis by laparoscopy. I agree this is a Catch 22 because if this same subset of patients were better informed, they’d likely be clamoring to generate awareness.

Yes, some of those “mild endo cases” end up really making life difficult for others who are much more severely affected, I think. Many people hear the word “endometriosis” and mistakenly think it’s a one-size-fits-all illness. Clearly, it is not. If, in fact, the woman you mentioned has endo that was in remission for all those years, she wouldn’t view endometriosis as such a big deal as opposed to someone who has never had any remission and who lives with unrelenting pain for decades. You’re right. She’s not alone. I’ve heard of plenty of women such as that.

My concern is more for people who are seriously impacted but, for whatever reason, don’t take any measures to spread awareness. There are some “endo blogs” out there that I have to avoid because they are, essentially, non-stop “pity parties”. I just can’t handle reading posts that wallow all the time. I don’t mean to sound cold but it drags me down and I just can’t go there.

I’m sorry that the situation with your co-worker just stirred up all of those emotions again. Infertility is such a terribly stressful thing!

You make perfect sense. I agree that if ALL patients experienced the pain and other issues that we do, they might be more vocal and might take it more seriously.

There are spectrums for many illnesses. There are people with mild chemical sensitivity, people with an official MCS diagnosis (varying severities), and what’s called “universal reactors”… people who end up with difficulty finding safe housing or even wind up homeless.

ME/CFS patients also have a broad range in severity of symptoms.

I think that societal stigma/taboo, as raised in previous comments, certainly comes into play with endometriosis.

As far as your second comment, women who “downplay” endo by wrongly assuming they are “cured” (don’t get me started) are, frankly, downright dangerous because they often spread misinformation about endometriosis. You know what my feelings are about endometriosis misinformation!

Jenn:

Awwww! Love mail? I like that! You can send me love mail anytime you want! ;)

Thank you for your kind words. I agree this topic is very important.

Yes, I was particularly pleased with how the petition was used in that case where many of us wrote letters to the editor of the newspaper that printed the GYN “expert’s” misinformation in a syndicated column. It was nice, for once, to have our voice heard. Dr. Neal’s letter combined with that petition full of signatures seemed to get a newspaper editor to (gasp!) actually listen to us for a change. A sign of hope for time to come, in my opinion. The more signatures we can get on that petition, the better! I agree this has to be a large focus of our efforts (using the petition for things like this).

Yes, there are still way too many myths circulating out there and not nearly enough knowledge about the truths and facts. It is difficult to know where to turn to when first diagnosed because not all information available online is created equal. Some sites post misinformation that makes me want to pull my hair out.

Yes, I agree with you and so many others that the still-taboo subject of women’s menstruation is an obstacle. Yes, I think we can work together to improve this. I agree that young girls and adolescents must be given accurate information. Open and honest discussion really is important. Also, young boys will someday grow to be men. If they are never clued in, they can’t be expected to magically know how to cope with an illness like endo. (Divorce rates among endo patients, sadly, are quite high).

Yes, indeed. Imagine a generation of young women who refuse to abide by this ridiculousness!

I agree that we can also make a difference for adults, just by being honest and open about our endo knowledge and sharing it with others.

Thank you for having the petition badge posted on your site.

Endo research really does have so far to go. I agree it will only happen if we push and fight for it. I too am disgusted by how many gynecologists are uninformed/misinformed, let alone the general population.

Yay! Jenn is on board. Yes, let’s go get ‘em!!

Diane:

Thank you! Posting a comment here while traveling out of the country? I’m honored. In general, I rarely worry about the stigma of endo (with some exceptions outlined above). It is freeing to be able to be honest about why one is feeling ill rather than make excuses or put on Academy Award performances, isn’t it? Yes, I try not to be too “in your face” but I don’t lock it up like a secret in Fort Knox either. Yes, I think one reaches a point where the hiding gets really “old”. Oh, don’t even get me started on those commercials. All I know is when that type of drug is covered on health insurance/prescription coverage and the same insurance company refuses to pay for medications used to treat endometriosis, I get angry. Travel safely!

~~~

Jeanne

14 Matthew SmithNo Gravatar { 08.03.10 at 10:54 am }

I’m in the UK and have never heard of the Komen Foundation, but we have all the pink paraphernalia surrounding breast cancer over here too. We also have “run for life” in which women do a short charity run, and sometimes display the name of a relative or friend who died of breast cancer (my sister did it a few years ago; our maternal grandmother, who died before either of us were born, died of it). I can see two separate problems with the pink saturation – one is that it smacks of all the pink princess nonsense being foisted on young girls, a kind of synthetic, stereotypical femininity, but the other is that it completely ignores the fact that men get breast cancer as well. Admittedly the numbers are far smaller, but if all the publicity surrounding an illness is saturated with pink (or lavender, as the women affected are usually in their 50s or older), then it makes it even more of a taboo for men who might be affected and tend to be less apt to see their doctor about these things.

(Incidentally, I notice that the ME community has been pretty good at avoiding over-feminising the literature about their condition, even though it mostly affects women, less overwhelmingly than breast cancer does but you will find online ME communities with near enough all-female membership. I recently bought a book on ME and noticed that, although all but a handful of the patients featured are female and the editor and designer is a woman, the design is not gendered in a way that might alienate a man. There are, however, some high-profile male sufferers.)

Also, about your statement “no man hesitates to talk openly about prostate cancer” – personally I’ve never heard them doing this in my social circle, not that it’s that big (or that there are many men in it), but there are huge taboos about these things and particularly about getting checked out. Women are just more likely to talk about their health than men, perhaps because they generally have more aches and pains than men do except when the men are actually sick. You might know that one of the tests for prostate cancer involves a finger being inserted into the rectum, which triggers a lot of taboos in our society; the treatment often involves anti-androgen treatment, otherwise known as chemical castration. There was an excellent programme on in the UK a couple of years ago in which a black political activist, Darcus Howe, who had had the illness, was shown trying to persuade older black men to get checked out as they are particularly at risk, and having a difficult and frustrating job.

15 JeanneNo Gravatar { 08.04.10 at 12:38 pm }

Matthew,

Pinkwashing is a hot topic for me because the more I learn about it, the more disillusioned I get about the whole situation. I have a couple of friends who are breast cancer survivors and both are adamantly against pinkwashing. Endometriosis patients are at increased risk for breast cancer. Prevention is vital. Things linked to breast cancer (pesticides, certain foods, commercial cleaning products, etc.) need to be addressed.

Here is a link to a recent study about cleaning products and breast cancer:

Silent Spring Institute

I’m sorry for the loss of your grandmother.

I agree that the “pink saturation” you described could deter some men with breast cancer from getting the medical attention they need. Breast cancer may be far less common in men than in women but it does happen and the sea of pink might not help matters for men with breast cancer. As far as the “pink princess nonsense”, I won’t even get started on that because it will get me riled up. Let’s just say I agree with you on the “pink saturation” front.

That’s great that the ME/CFS community has found a way to avoid over-feminizing the literature. I do think that when a condition becomes too associated with a gender (i.e. the female gender), it can be detrimental to patients. Goodness knows endometriosis probably wouldn’t have been so historically under-funded (to a pitiful degree) if it were not an illness affecting women.

Regarding my statement, “no man hesitates to talk openly about prostate cancer”… I could have worded this better. I usually take great pains not to talk in absolutes like “no man” or “all” or “never”. In this case, however, I did say “no man”. Obviously, I made a generalization here since I certainly can’t speak for where all men are coming from regarding talking about prostate cancer. I have heard numerous men (including relatives) talk about prostate cancer with the same openness with which they might discuss diabetes or the flu. Seriously, where I live prostate cancer has been de-stigmatized to the point of being discussed very openly (similar to how breast cancer is discussed here). Obviously, I can’t speak to how illnesses are discussed in the UK. I’m speaking from my own frame of reference.

As far as illnesses that require rectal exams are concerned, a thorough gynecological exam has this as one of many components. Without in any way trying to minimize anything prostate cancer patients have to deal with, endometriosis patients typically deal with such indignities on a ridiculously regular basis. Many endometriosis patients are familiar with the concept of chemical castration as well. One of the primary pharmaceutical treatments for endometriosis is GnRH agonists. (I’m purposely not mentioning pharmaceutical brand names here. They get enough advertising without my help). These same drugs are used to treat prostate cancer patients. They induce a pseudo-menopause for women.

That is great that Mr. Howe is working to encourage males to get checked out for prostate cancer.

Thank you for your feedback.

Jeanne

16 Endometriosis Advocacy (VIDEO) — ChronicHealing.com { 08.05.10 at 2:32 am }

[...] Endometriosis Apathy? [...]

17 Jannie FunsterNo Gravatar { 08.07.10 at 8:36 pm }

Hi Jeanne, I updated the endo petition on my site — I have to do it manually changing it up.

I think if we could get other bloggers to post it on their sites there would be a much stronger and faster growth of signatures. Bit, by bit, by bit..

xoxo
.-= Jannie Funster´s last blog ..“Somewhere On A Michigan Highway” — Singin’ For &amp About The G-Man =-.

18 JeanneNo Gravatar { 08.07.10 at 10:12 pm }

Jannie,

I’m happy to see you. My blog was down for more than 24 hours and you are my first commenter since my blog came back up! Woo hoo! :)

Thank you so, so much for your efforts on endometriosis awareness! I know that you have a ‘modified’ button that requires being manually changed. (Note to readers: if you are interested in posting an endometriosis awareness button/badge on your site, please let me know and I will send you the code for a button that automatically updates each time someone signs).

I couldn’t agree more! The more bloggers we can get to post the petition badge, the more signatures we’ll get!

I’ve been asking people to post it for a long time now. So, I’m honestly not sure how many more people I personally can motivate to post the petition badge. I’m just thinking that if everyone who already has posted the badge asks others to do so too that we will reach more and more people.

The more blogs that post a petition badge, the more people see it. The more people see it, the more people sign it. The more people sign it, the more powerful a tool it becomes when interacting with the media.

Yes… bit by bit, we WILL get lots more signatures! ;)

I am hoping that by my posting about the petition on another medium the other day (YouTube), an even broader audience will find and sign it. I’m hoping that any of my readers who have a YouTube channel will comment on the latest video about endometriosis, rate it, and maybe even (dare I suggest?) favorite it… so that people who view their channels will be more likely to see (and sign) the petition. Bit by bit.

Site by site, tweet by tweet, ‘Facebook share’ by ‘Facebook share’, YouTube video by YouTube video… we WILL get lots more signatures!

Thank you, Jannie! If there is one person incapable of apathy, it’s you. ;)

Jeanne
xoxo

19 alohamorakatNo Gravatar { 08.17.10 at 2:41 pm }

Jeanne,

Endometriosis awareness is very important. I hope you are having a fabulous day. :)

Alohamorakat

20 JeanneNo Gravatar { 08.17.10 at 2:48 pm }

Alohamorakat,

It sure is! I hope you’re having a fabulous day too! ;)

Jeanne

21 Pain-Blog Carnival, October 2010 | How To Cope With Pain Blog { 10.27.10 at 12:23 am }

[...] Chronic Healing writes a provocative article about different levels of advocacy for different illnesses. [...]

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