Category — Irritable Bowel Syndrome
For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).
In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.
Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.
I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.
I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.
Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:
I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.
Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.
When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.
Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.
It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.
Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.
In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:
Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.
There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.
One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.
Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.
No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.
My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.
I have a sense of peace now that I didn’t have in my younger years.
Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.
Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.
Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!
An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!
March 7, 2011 55 Comments
While I generally strive to focus my energy on things like gratitude, positive energy, and moving forward… there are times when I fill like my energy has just gone down the drain.
My blog post titles are generally a bit cheerier than today’s but the fact is that I am exhausted right now. Some days are like that. For several days now, I have wanted to write a blog post. However, I haven’t been able to summon up the energy until now.
Yesterday, I spent most of the day in bed. After having woken up with a migraine, I went back to bed shortly after I got up. My body was telling me in no uncertain terms to rest. So, I listened to my body.
This time of year saps my energy because the cold weather exacerbates my fibromyalgia. So, that is a factor in my drained energy too.
The altered schedule and additional responsibilities associated with the holidays are certainly a factor in how drained I am also.
How about you? Do you feel drained? Is your energy level lower than you would like it to be?
When your energy is drained, how do you rejuvenate?
Do you get extra sleep?
Do you listen to music? (Regular readers here know that the music that helps me the most when I need healing is that of Tori Amos). Whatever type of music you like, is it as powerful for you as it is for me?
Do you take a hot bath?
What do you do when you are feeling drained? What lifts your energy? Are you like me where a hot bath can help or make matters worse depending on just how low your energy level is? Are there times where you feel too dizzy or exhausted to take a hot bath? Are there other times where a hot bath makes you feel much better?
Other than getting additional rest, listening to music, and taking a hot bath… what activities are helpful to you? I would love to hear your feedback. What works for one person may not work best for another. However, I think it can be helpful to share coping strategies. Please share some of your coping skills.
What is in your bag of tricks?
January 5, 2011 18 Comments
As 2010 draws to a close, I would like to thank everyone who took the time out of their busy lives to support Chronic Healing (here, by ‘liking’ the relatively new Facebook page, by “following” Chronic Healing on Facebook’s NetworkedBlogs, etc.)
From talking with many fellow chronic illness patients throughout the year, I know that some of you have suffered losses, setbacks, and escalation of symptoms. Some of you have suffered stress associated with physical pain, the financial burdens associated with chronic illness, and/or the emotional toll that illness or life circumstances have exacted.
Others have experienced progress in dealing with symptoms, in learning about previously unknown/poorly understood treatment options (i.e alternative medicine options that typical MDs don’t exactly dole out referrals to, generally speaking), or simply have learned better ways of managing the illness(es) in question.
Some of you have a complex combination of the above (i.e. 1 step forward and 2 steps back).
Some of you are fortunate to have a remission of symptoms but want to stay in the loop about the chronic illness(es) you have because you are fully aware that the illness(es) are incurable and you want to stay informed and linked to fellow patients.
Others of you aren’t chronically ill at all. Perhaps you are supporting a chronically ill loved one or friend by learning more about his/her condition. Or perhaps you are trying to learn more about chronic conditions for other reasons altogether!
Whatever it is that brings you to Chronic Healing, please know that your support is appreciated very much!!
Whatever category (or cross-section of categories) applies to you, I hope that you find Chronic Healing a safe place to turn to when you feel the need for support, information, and connection with others from the chronic illness community.
Sometimes the validation of knowing that there are others (many others!) who share the same chronic illnesses is helpful. The validation can provide major relief for patients who need to feel like someone “gets it”.
The degree of caring and compassion in the online chronic illness community is strong, powerful, and incredibly helpful to so many!
For those of you who have discovered Chronic Healing recently through the relatively new Facebook page, please be aware that there are over 400 posts on this blog itself. It may well be that there is a post (or many) that you can relate to. So, don’t be shy taking a peek through this blog. Some of those older posts might be helpful to you now even if it’s been awhile since they were written.
I cannot thank everyone enough for the blog comments, support, feedback, link-sharing, etc. It is a joy to interact with so many caring, kind, thoughtful individuals (ill or healthy!) in the course of my journey writing Chronic Healing and interacting with people on many other sites besides my blog, such as Facebook, as well.
The amount that I have learned from fellow patients since I started blogging in 2008 is mind-boggling. The 16 years I spent attending endometriosis support group meetings every month prior to starting my blog laid a foundation for me to be able to learn how to help connect patients with each other (once it had first been so wonderfully modeled for me, of course)! I am inspired every single day by fellow patients, activists (health or not), and all sorts of people who focus their PASSION on helping others and, basically, making the world a better place to live in!
I have laughed and cried with many of you. Some of you, I am just getting to know. All of you are appreciated! When I started my blog in 2008, I was nervous and unsure of what to expect. Obviously, I was excited too. However, there was plenty of uncertainty starting out… and starting a blog was something I thought about for a few months before diving in.
Now, 2.5 years later… I have a hard time remembering what life was like before I started writing my blog. It truly has been a life-altering experience.
I wish a HAPPY and HEALTHIER New Year to you all!!
December 31, 2010 9 Comments
The first two quotes below may seem like an unusual way to begin a piece on the topic of LOVE. However, I feel the need to provide some context. While my intention with my Love Beats Hate post is to focus 97% of my energy on writing about LOVE, I feel that before I can do that justice I need to very briefly address the topic of hate. The fact is that while this campaign was inspired by many things, the factor that is probably most responsible for its inception was something incredibly negative that appeared on a social media site.
“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered”.
~~ Michael J. Fox
This quote perfectly sums up my feelings in regard to the situation mentioned above. While the content that the individual in question posted was despicable and aimed at people belonging to various marginalized groups, the people he was attacking can choose how they respond. He does not have the power to take away anyone’s dignity. While the social media situation I just mentioned is one of the biggest factors that inspired this Love Beats Hate campaign, I wish to point out that individuals who spread such hatred online are the exception rather than the rule. There are far, far more people on the Internet (on social media sites, blogs, forums, etc.) who are caring for one another, supporting each other, and… yes… LOVING one another.
“Hate is too great a burden to bear. It injures the hater more than it injures the hated”.
~~ Coretta Scott King
The quote above really captures the notion that the person disseminating hate is actually harmed more by doing so than are any of his/her targets. While the primary targets in the very unfortunate situation I recently witnessed were people who have a disability or serious illness, other people from various marginalized groups were cruelly attacked there as well. It is empowering to know that we can choose how to react to such hatred and bullying. It is reassuring to know that for every one individual who spreads hatred online, there are far more people who conduct themselves in loving, positive, helpful ways!
With so many people (both bloggers and non-bloggers) joining together to shine the spotlight on LOVE rather than on hate, it is easy to see how a negative situation can be turned into a positive one by speaking out on our own terms about the prevalence of countless examples of loving kindness found online… rather than surrendering to those who engage in spreading hate.
“The greatness of a community is most accurately measured by the compassionate actions of its members, … a heart of grace and a soul generated by love”.
~~ Coretta Scott King
If the greatness of a community is most accurately measured by the compassionate actions of its members, then I have been fortunate enough to discover an enormous number of locations on the Internet that are fairly brimming with love!
“Compassion is not religious business, it is human business, it is not luxury, it is essential for our own peace and mental stability, it is essential for human survival”.
~~ Dalai Lama
I believe it is important to share a determination to shine a spotlight on the positive end of the spectrum of online behavior. My goal here is to focus on the massive, seemingly endless supply of opportunities to interact online with people who exhibit loving kindness, compassion, support, caring, concern and so much more. Too often, our gaze may become focused on the extreme examples of negativity online (cyber-bullying, hate speech targeting marginalized groups, and general mean-spiritedness). To be clear, such negative spaces are real and I find them very troubling.
“Bullies are always cowards at heart and may be credited with a pretty safe instinct in scenting their prey.”
~~ Dr. Anna Julia Cooper
Let’s stop and think for a moment. How often do we hear news stories about positive uses of the Internet such as harnessing the power of social media for good causes that help people? How often do we hear about the benefits of people interacting with others online? Chronic illness patients can benefit even more than most, I believe, due to the nature of their situations. I believe the Internet is a PARTICULARLY valuable asset for people with chronic illness, chronic pain, and/or for persons with disabilities. People in these groups that can, at times, become isolated by their situations. For example, people with chronic conditions and/or people with disabilities sometimes find it more difficult to be out and about due to access issues or simply being too sick to leave the house. I have met many patients online, for example, who are housebound or bed-bound but are able to interact with people online thanks to the technology available today. This access to support is enormously helpful.
“Cruelty might be very human, and it might be cultural, but it’s not acceptable”.
~~ Jodie Foster
Again, bear with me while I touch on the negative to highlight the positive. How often have you flipped on the evening news to hear about subjects such as the unbelievable power of online support groups? (I’m guessing you haven’t seen such a story on the news lately… or maybe ever). How many times have you seen a story in the media about a community of patients (formed online and active entirely online) that rallies around all sorts of patients… including people who are housebound or confined to their beds… with their online friends as an important component of their ability to socialize with others and obtain support and information regarding their conditions? (Here I should point out that it is not appropriate for one patient to give another medical advice. I am referring to patients sharing information which can assist them in advocating for themselves when seeing their own physician/s).
Since I started a blog in June 2008, I have encountered a very diverse group of people online. Just as with life offline, there will always be bullies. However, my experience has been that the caring, thoughtful, considerate people far, far outweigh the bullies.
Whether it is on blogs, social media sites (like Facebook and Twitter), forums, etc., I have encountered some of the kindest, most empathetic, caring people online.
“Shower the people you love with love. Show them the way that you feel”.
~~ James Taylor
I have witnessed patients checking in on each other when one knows another is feeling particularly ill or has recently been hospitalized; I have seen people join forces to support causes they believe in that help people and literally make the world a better place; I have watched people transition from more “traditional” roles as patients to roles as passionate activists who fight for their cause(s) and advocate for themselves (in their own health care and on behalf of the patient population/s they belong to). All of the above are actions executed with love – both love for others and self-love…
“Compassionate action involves working with ourselves as much as working with others”.
~~ Pema Chodron
There is no shortage of love on the Internet. It’s everywhere. Are you skeptical of this notion? If this has not been your experience, maybe you just need to know where to look. For all of the negative stories about incidents that happen online, there are so many more that are positive!
This Love Beats Hate campaign was just started on November 10, 2010! Within only a week, a significant number of bloggers have registered to blog today about Love Beats Hate. Even more people have “liked” the Facebook page Love Beats Hate and/or marked the Love Beats Hate Blogging Event page to indicate that they will be participating in the event. Many others have sent messages on Twitter using the hashtag #LoveBeatsHate.
Please do continue to share information about today’s campaign on Facebook and Twitter. It would be wonderful if we can work cooperatively to share the blog posts of those who are blogging today on Love Beats Hate!
One does NOT need to have a blog (or the ability/time to blog today) to be a part of this event.
Here are some ways you can be a part of the Love Beats Hate event even if you don’t have a blog (or the ability/time to blog today):
- Share links pertaining to this event on Facebook, Twitter, or via email. (Please use the hashtag #LoveBeatsHate for messages sent on Twitter about this event).
- You can check the list of bloggers who have registered and simply read their blog posts about “Love Beats Hate” on 11/17.
- If you wish, you can leave comments on one or more of these participating blogs to show your support for the “Love Beats Hate” campaign and to let the blog authors know what you think of what they have written.
- On November 17th, you can visit the Love Beats Hate Blogging Event page. You never know who you might run into there. Chances are good that you will encounter a like-minded individual who cares about the event like you do.
In closing, I would like to encourage everyone to generously share the links to the pieces written by the bloggers who are writing for this event. I believe it can make a positive difference.
“A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history”.
~~ Mahatma Gandhi
I wish everyone reading this peace and happiness. I absolutely love blogging and one of the biggest reasons is the sense of love, support, and community I have experienced online. My only hope is that I can give back a fraction of the benefits I gain from interacting with people online.
“Happiness is when what you think, what you say, and what you do are in harmony”.
~~ Mahatma Gandhi
Let’s take care of each other out there. Let’s not let hatred get the attention. Let’s work to make LOVE so abundant that it cannot be ignored or overlooked. I believe we have the power to change the narrative. Let’s focus on fostering and recognizing the loving, caring, helpful actions and words online. This doesn’t mean burying our heads in the sand about the hatred that does exist online. However, let’s not get sucked in to a situation where we are feeding the energy of those who spew hatred. Instead, let’s join together to encourage and acknowledge the love around us each day online. Look around you. It’s everywhere! Let’s work to help each other. It makes us all stronger in the process.
“The best way to find yourself is to lose yourself in the service of others.”
~~ Mahatma Gandhi
It’s not too late to join this event. Please join us right here for blogging:
Again, there are many things you can do to support this event if you do not have a blog or are unable to publish a post today.
Looking for more information?
Or, just follow (and use!) the Twitter hashtag: #LoveBeatsHate.
November 17, 2010 40 Comments
This is the longest span of time there has ever been between blog posts here. I have been really busy offline “putting out fires”. I just wanted to make an appearance here so that no one thinks I have abandoned my blog.
The flare-ups of various conditions that I mentioned previously are ongoing. So, things are just challenging at the moment but I will try to get back into the swing of things as soon as I can.
I have been feeling quite overwhelmed lately and I look forward to getting things to calm down. I have been dealing with multiple crisis situations and it has been frustrating.
The fibromyalgia, interstitial cystitis and irritable bowel syndrome are all doing a little better now than they were a couple of days ago. Once I get through my third period in a month, I might start to feel better still. Let’s hope so.
Right now, I am trying to switch from fighting fires to implementing better self-care. I’m working on it.
I had a doctor’s appointment today. Someone on the staff wears a fragrance that makes me extremely ill. Despite the fact that it was rainy and cold, I waited outside until the doctor was ready to see me because waiting in the waiting room was completely out of the question. The receptionist was kind enough to bring my receipt and paperwork outside because I was unable to make it through the check-in process.
THAT is how strong the fragrance was. It is an hour drive home and I wasn’t going to risk fainting in the office or being unsafe to drive myself home from the appointment. On a more positive note, it isn’t snowing yet and there is a bench outside that is under the overhang of the roof. So, I didn’t have to get wet waiting outside or get sore (neuropathy) feet from standing. I was also extremely grateful that no one was smoking outside while I was there waiting!
The head pain that my primary care physician narrowed down to either cluster headaches or migraines a few months back is happening consistently with every period now. So, my head already hurt before I got to the fragranced office. I certainly wasn’t going to add to my head pain by staying in the waiting room. On a separate note, I asked my PCP to order a Vitamin D test. I got the lab results this week. Come to find out, my Vitamin D level is low. So, I owe my friend a thank you for encouraging me to get that checked.
To end things on a brighter note, my husband got a call today about a job he had interviewed for. I had written previously about the job situation. This company has interviewed him nine times. One of the interviewers wants to do a second interview on October 22nd. My husband is extremely excited about this interview because it is for the position he was the most excited about! (The company interviewed him for multiple positions in those previous nine interviews). So, let’s hope everything will be coming up roses soon with the job situation.
October 14, 2010 6 Comments
Have you ever felt like you were flattened by a steamroller? Well, other than a few brief appearances here and there on Facebook, I haven’t been online much. The fibromyalgia flare-up that began several weeks back escalated within the last couple of weeks. There have been times where I have felt like I was just flattened by fibromyalgia. Getting out of bed in the morning has been a Herculean feat. The stiffness and pain have been really intense in the morning. Some days it has been difficult to walk from room to room. Every day, I have had severe head to toe pain.
On days like today when it rains, I dread the idea of needing to go outside. Rainy days aren’t just a problem if I venture outside. I don’t have to go or look outside to know it’s rainy. I can feel it no matter where I am. Sometimes, I feel like a human weather vane. I know the air will hurt my skin stepping out into a rainy day. My body feels like one big bruise. Everything really hurts.
I love fall. I always have. Fibromyalgia will not steal my love of fall from me. At the same time, as I wrote last year in Fibro Fall, I am fully aware that the change of seasons from summer to fall wreaks havoc on my body. It is what it is. I can’t control the weather.
On Saturday, I had my regular acupuncture appointment. When I have an appointment, I inform my acupuncturist about which symptoms have been bothering me since my last appointment. Needless to say, I filled him in on the fact that my fibromyalgia pain has been flaring-up badly. I was so happy that my acupuncture appointment was on Saturday. I love acupuncture so much!
In addition to this fibromyalgia flare-up, I have been dealing with an interstitial cystitis (IC) flare-up. (I am thankful that I have the ability to do bladder instillations at home). As is so often the case when my IC flares up, my irritable bowel syndrome (IBS) has been flaring up too. Somewhere in there I had a period that was more challenging than most. The cyclical rectal bleeding that prompted colonoscopy number four in April 2009, which I wrote about previously here (Colonoscopy Results With Pictures) was worse than usual. (If you have cyclical rectal bleeding and your doctors tell you it is unrelated to endometriosis, just know that there are other patients who have this. See your doctor if you have this symptom). In my case, the bleeding happens every month and generally precedes my period by two days.
In addition, my head was killing me during my period (as happens with every period now, to one degree or another). So, I haven’t been up to writing lately. Throw in a few mild multiple chemical sensitivity (MCS) reactions for having the audacity to leave the house for good measure and it has been challenging the last couple of weeks.
Anyhow, my fibromyalgia is still flaring but I am doing better than a few days ago. This is quite possibly related to the fact that I had acupuncture on Saturday. Having talked with many online friends who have fibromyalgia, I know that I am not alone in having a flare-up now. My thoughts go out to fellow patients who are dealing with increased pain at this time. I have been feeling flattened by fibromyalgia. If only the fibromyalgia itself could be flattened instead of the other way around.
On a random side note, I would like to thank my Facebook friends for supporting this blog on NetworkedBlogs and helping it to be ranked in first place there for endometriosis blogs. Interested in following this blog on NetworkedBlogs on Facebook? Just click here: here. Thank you.
September 27, 2010 29 Comments
Have you ever felt like you were viewed as a cash cow?
Q: Are endometriosis patients viewed as cash cows? Are the 89 million endometriosis patients worldwide viewed as a source of revenue?
A: We’ll come back to this question in a moment. (Try to stand the suspense).
First, let’s see what these people think on the matter:
New Market Report Published. New report provides detailed analysis of the Healthcare and Medical market.
Let’s re-visit the question I posed earlier…
Q: Are endometriosis patients viewed by some as cash cows?
Today, I posted the link above on Facebook. I attached this comment:
Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.
One of my Facebook friends responded (in part) like this:
It seems to me that health-related nonprofits that represent chronic, invisible illnesses are becoming archaic, outdated. Our participation in social networking is doing more for us than most of these nonprofits are, from my point of view. And, social networks don’t charge dues and fees, don’t depend on corporate/government funding to dictate what they can and can’t do, and don’t have to brag and spin the truth every ten seconds!
I am not suggesting that all health-related nonprofits are outdated or inefficient. I do think many are, though. In 28 years of living with chronic illness and having interacted with a great number of health-related nonprofits, I have had the opportunity to witness some things that opened my eyes. This is especially true since I have so many different chronic illnesses and I can look at the big picture and compare/contrast various health-related nonprofits as far as how well they have (or haven’t) served my needs and the needs of those I care about (my online friends, my local support group members, family members who are chronically ill, etc.)
So, I went on to say to my friend that I agree about the bragging/spinning truth aspect for so many health-related nonprofits. I have personally witnessed multiple health-related nonprofits that hold making money as a priority over patients’ best interests. Sometimes, nonprofits I am familiar with have focused on attracting members to their organization (to pay dues, donate money) so intensely as to lose focus on how best to help the patients obtain the support and information they need.
Please note that I wish to broaden this conversation beyond endometriosis. My friend’s feedback to mine in conjunction with the above link about endometriosis was regarding health-related nonprofits in general. We were no longer just talking about endometriosis at all.
This isn’t just about endometriosis patients being viewed as cash cows. Let’s face it. How many chronically ill patients are not viewed as cash cows? By the very aspect that illnesses are chronic, the patients’ needs are ongoing. Whether we talking about need for treatment or need for information and support, patients with chronic illnesses have ongoing needs and this makes them potential cash cows for those who wish to profit from their pain.
“Jeanne, step away from the topic of endometriosis”!
Regular readers here know that while I write about numerous chronic illnesses, endometriosis is definitely a focal point of my blog. Sometimes, a story like the one linked near the beginning of the post will inspire a post directly or will lead to me posting it on Facebook and proceeding to blog about it. I have made a conscious effort to expand this beyond endometriosis. I truly believe that ALL chronic illness patients are at one time or another viewed as “cash cows”.
So, let’s revise the question beyond endometriosis…
Q: Are chronically ill patients viewed as cash cows? (Nearly one in two Americans – 133 million – has a chronic medical condition of one kind or another). Are they viewed as a source of revenue?
Even if every doctor and health-related nonprofit organization out there were extremely ethical, passionate, and dedicated in their efforts to interact with patients (if only this were true), the fact is that chronic illness patients are still “cash cows” in the aspect that their needs are ongoing. Therefore, with nonprofits, membership dollars or donations tend to keep flowing to nonprofits so long as patients they feel their needs are being met/they are getting value for their dues (or until their funds are depleted and they can’t afford to pay for membership… especially when so much information is available for free online). With healthcare treatments, chronic illness patients tend to take great pains to seek out the best treatment they can find to meet their needs (again, within their means).
Make no mistake! Nonprofit “charities” may have “nonprofit” in their names but they absolutely care about making money. They need money to keep running. They may recruit members with dues that entitle members to newsletters or discounts. Some are clearer than others on how they spend any money they receive from membership dues or donations. Some organizations do a better job than others at things like managing money, prioritizing how it is spent (ethically? in the best interests of the patients they are supposed to be serving?), or keeping special interest groups like pharmaceutical companies from worming their way into their organizations.
In other words, despite the title of this post and the link above happening to be about endometriosis, I would argue that there are a great many examples out there of organizations (some of which are health-related nonprofits) and healthcare providers connected to all sorts of conditions whose interest in the subject at hand is focused on making money more so than on what is in patients’ best interests.
I agree with my friend that some nonprofits most definitely have room for improvement on how to use social media to serve the needs of patients (especially how to do so in an ethical fashion).
Here is a portion of what I then said about the state of many health-related nonprofits that represent chronic, invisible illnesses:
Others (other health-related nonprofits) are very aggressive with social media and are spinning the truth in circles. Some even prey on the patients.
I went on to say that as far as return on investment issues, I think that some nonprofits have their priorities off-base. They lose sight of what should be their number one priority (the best interests of the patients they represent and are supposedly advocating for)! I think they focus too much energy on other things.
Question: Shouldn’t an organization that professes to advocate on behalf of a particular patient population being making the patients’ best interests a number one priority?
My friend said, “Your last point about losing sight is so on target” and “Very difficult issues, especially when huge egos are involved”.
The bottom line I wish to hit home with this piece is that it is imperative for patients to do their homework – and research organizations before sending in membership dues and/or donations no matter how slick the organizations’ pitches are. How to go about doing so is too much to cover in this post. Just be aware that nonprofits are not automatically “saintly”.
Also, before you retweet a link on Twitter or share it on Facebook for a health-related nonprofit, I urge you to do some basic fact-checking on the organization. Doing so before you decide to share their links online is important because without checking the organization out, you don’t know what it is you’re promoting. Just a slight amount of digging on a particular organization may yield enlightening results that may well make promoting them feel less appealing.
Obviously, selecting medical care to best meet one’s needs is very important too. Again, this is beyond the scope of this post but it’s important for patients to make informed decisions.
You may not like being a “cash cow” but if you are going to be viewed as one, wouldn’t you like to support the organizations and doctors that have YOUR best interests in mind (and withhold your support from unethical, dishonest, exploitative, and/or inefficient organizations)? It’s something worth really thinking about, I think.
—————> What do you think???
September 15, 2010 16 Comments
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 email@example.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!
August 1, 2010 21 Comments
Everything seems to be frozen now. No, I’m most definitely not talking temperature. Quite the contrary. My heat intolerance has been very challenging lately. (Cue the dysautonomia series re-post). No, I mean I’m frozen as far as writing blog posts right now.
No, I do not have a writer’s block. Quite the contrary. I have ideas about what to write fairly bursting out of my head. However, illness and time constraints have kept me from writing about even a fraction of what I’d like to be writing about. So, bear with me. I’ll try to catch up as soon as I am able.
Those of you connected with me on Facebook heard bits and pieces about why I narrowly averted a trip to the emergency room on Saturday (long story requiring a future post). I’m grateful to be doing better than I was Saturday but I’m still having considerable pain. So, bear with me. I’m sure with this hot weather I won’t stay frozen for long! Stay tuned!
June 14, 2010 3 Comments
On June 1, 2008 I set off on an adventure. I had no idea where it would lead. That was exactly two years ago today. It has been a labor of love to be sure and I am extremely grateful for the opportunities and joy it has brought. It has been a wonderful journey and learning experience. I have met some of the kindest, funniest, sweetest, most compassionate people from around the world the past two years!
On that day, I began writing a blog called Jeanne’s Endo Blog. It was never really a blog about just endometriosis at all.
However, when I started writing a blog I knew endometriosis would be one of the illnesses on which I would focus my writing. After all, my journey with chronic conditions began 28 years ago with endometriosis. I was then just thirteen years old when my symptoms started in 1982. Ten years after that, I had a laparoscopic surgery that finally gave me a name for the illness that had turned my life upside down at age 13: endometriosis. It has been said that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. So, the time lag for my diagnosis was a textbook case. This type of delay is absolutely unacceptable. (There are many previous posts about why such a delay occurs – in the 373 posts that preceded this. I encourage readers to check my blog’s archives and/or search box in the right sidebar to locate such posts).
Regular readers here know that I have by no means confined my writing to endometriosis. At the same time, my passion for the endometriosis cause has made it a focal point amongst the posts about other illnesses and causes.
My husband commented a few days ago that my keyboard (new as of about a year ago) has been used so much that many of the letters no longer have their markings. That’s right. I have worn the letters off my keyboard. It has been a busy two years!
As the years have gone on since I became chronically ill in 1982, quite an array of additional illnesses have been added to my list of diagnoses. This link mentions a few of them. I have so much that I wish to say about each of my chronic conditions that I often have an internal struggle regarding how to spend my time and focus my energy.
So many of these conditions need more awareness! So many are poorly understood and under-researched/under-funded. So many involve patients whose experiences are not validated by our society or even their own loved ones (especially true for the “invisible illnesses”). Many patients are accused of exaggerating or of having “psychosomatic” illnesses. I struggle with how to give fair time to each of these illnesses. Which way should I turn? Which illness is facing the most pressing issues? Which illness is having an awareness day/week/month? How can I best help the causes that are dear to me? What is the most efficient use of my time?
Where should I go next when there is so much to do?
The reality is that I can’t do justice to all of the topics that I wish I could write about as frequently as I would like to write about them. I try to but the risk of burnout or escalating symptoms forces me to prioritize as best I can and try to pace myself. Sometimes I am better at this than others. Sometimes I don’t practice what I preach about the importance of self-care. To attempt to do justice to every issue I’m passionate about with my writing tends to throw the self-care I preach out the window. The reality is that I need to practice what I preach and take care of myself so I don’t get sicker and/or burned out from pushing myself too hard. This is probably the most challenging part of blogging for me. If I wrote 24/7, I could never do justice to each illness the way I’d like to in a perfect world. There are just 24 hours in a day. I have some serious health problems that place limitations on me. I may not like it but it’s the reality. Even if I were healthy, what I wish I could write about is beyond what one person can do. I have been trying my best to make peace with this fact.
In addition to writing about illnesses I have, I also advocate for causes I believe in (such as illnesses that do not affect me firsthand but do impact large numbers of my friends – online and off). Also, I spend an enormous about of time in “off the blog” conversations with fellow patients: giving/receiving support, sharing resources and information, working as a team to research issues we care about, etc.
When I converted my blog from Jeanne’s Endo Blog to Chronic Healing, I wanted a blog name that captured my desire to keep writing about many chronic conditions. I wanted the name to expand beyond endometriosis alone. Finally, I wanted it to be positive and reflect healing.
In the course of a conversation with Cassie Germsheid (who re-designed my blog and migrated my data from Blogger to WordPress) about what to name this blog, I decided on the name Chronic Healing. With Cassie’s outstanding help and a great deal of hard work, I was able to realize my goal of launching Chronic Healing on June 1, 2009… the one year anniversary of when I began blogging initially. There was an enormous amount of data migrated. Cassie helped me make Chronic Healing what it is today.
Now, here we are a year later. I cannot express how much I have learned, how touched I have been by the kindness and compassion of so many people that I have had the privilege to “meet” online, how many intense/strong connections I have made with fellow patients around the world, how much support and information I have received, etc. My only hope is that I have been able to touch the lives of those I have met on this awesome journey even a fraction of how much they have touched me. It has been an honor and a joy to interact with so many people who practice compassion and loving kindness each day.
The LOVE expressed to me by my online friends warms my heart and amazes me every day. It truly is amazing and heartwarming. The acts of compassion I have witnessed these last two years are beyond anything I could have imagined.
It would be impossible for me to thank everyone publicly but please accept this post as my blanket thank you to everyone. If you are reading this, the thank you applies to you!
Moving on, there is exciting news ahead that is related to a venture that my friend Amanda recently embarked on. Like me, Amanda has endometriosis. She has a new site that is up and running now and you can check it out by clicking below. I encourage you to do so!
So what is the exciting news? Well, I had contemplated last week whether to do something to celebrate this two year anniversary but had not decided upon anything. It was just a fleeting thought and I hadn’t decided whether I would or would not have some sort of blog giveaway. The very next day, my dear friend Amanda contacted me volunteering to donate something very special for a blog giveaway.
She had absolutely no idea of my blog’s anniversary date and was simply offering to donate a handmade item because, frankly, it is in her nature to do thoughtful, caring, supportive things like that.
I was very pleased with the timing of Amanda’s generous offer to donate an item for a blog giveaway. For it to be a handmade, beautiful giveaway item from someone I respect so much and for it to unfold at the perfect time for an anniversary giveaway is just wonderful.
It gets even better… The handmade item she is donating for a blog giveaway for this very post fits perfectly with the healing theme of this blog! You see, Amanda uses healing crystals in her handmade jewelry. What a perfect way to honor healing… the very theme of this blog.
Before I share a description of the item or the photograph of the prize that someone reading this will win, I would like to urge readers to check out Amanda’s new online shop. She recently launched her own business and I am beyond thrilled for her! Click below to check out her site:
Please note that the above link will take you to two places (her online shop and her blog). On the Amanda’s Patch blog, she has a section that talks about endometriosis. As Amanda puts it on her blog’s endometriosis section, here is why she included some information about endometriosis on the blog:
“You see, my endometriosis was a massive part of the decision to start Amanda’s Patch and so it had to be involved somewhere”.
I love the way Amanda increases endometriosis awareness through her new business and lets those visiting her shop’s blog know why the endometriosis cause is important to her! She is integrating her personal experience into her new venture in such a wonderful way that can educate people about endometriosis. (Among Amanda’s past blogs is “Me and You at 22″, which many regular readers here will recognize).
Well, I have reminisced enough. I do believe it’s time to get on to the details about the blog giveaway!
Here is a photograph of the beautiful necklace handmade by Amanda:
Prize description of necklace:
Amanda says, “the necklace is made from amethyst and aventurine beads crocheted onto silver-plated copper wire and has a lily-shaped toggle clasp. Amethyst and aventurine are both part of the quartz family, which means they complement each other beautifully and will go with pretty much any other crystals the winner may wear”. Amanda adds that as far as energy is concerned, “all crystals have energy properties”. She also notes that, “all types of quartz have different properties but the family are, quite simply, great for healing negative energies!”
Amanda notes: “amethyst works with the ‘higher’ chakras, particularly the third eye and crown chakras which will help on a physical level for the head and sinus areas as well as spiritually by helping to clear the thoughts and emotionally by helping to clear the blocked emotions” and that “aventurine works on the heart chakra, helping to ease heartache, particularly caused by factors out of our control. Green is a particularly healing color (colors are so important). It helps ground us, find the best in our environments (think of connections with nature) and is great for emotional pain”.
Finally, here is some random trivia about crystals. Amanda tells me that work is being done on using crystals as massive data storage devices. I did a search online and I found a link about this topic here:
As with past blog giveaways, the winner will be chosen randomly based on comment number and you may leave as many comments as you wish. (Obviously, multiple comments increase your odds of winning this beautiful crystal necklace). Amanda has generously offered to ship the prize to the winner regardless of their location. So, this contest has no geographical requirements. If you’re interested in a chance to win this lovely necklace, be sure to leave a comment! I’ll pick a winner in a few days. I haven’t decided when I’ll be picking the winner. So, get your comments in now to enter.
June 1, 2010 26 Comments