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Endometriosis Awareness Month: Reflection Time

As I have written previously, I have not been able to do the sort of endometriosis advocacy work I normally do this time of year – for Endometriosis Awareness Month – due to an offline situation that has been largely keeping me from my normal activities. However, I did want to take a moment, as Endometriosis Awareness Month winds down, to reflect back on things.


On March 17, 1992 I had a laparoscopy and was finally diagnosed with endometriosis. My symptoms began in 1982 when I was 13 years old. It’s hard to believe that I have been living with endometriosis for 30 years now. As you might imagine, I feel especially ancient when I read blogs of endometriosis patients who are under 30. Just kidding! I’m really not one to get hung up on age.


On a more serious note… The first 10 years that I lived with endometriosis were often frustrating, stressful, confusing, and very painful. I knew something was wrong because surely nothing that causes that kind of pain could possibly be normal! However, I was too young to know how to advocate for myself or properly articulate just how much pain I was in. I pushed myself very hard and taught myself various coping mechanisms and ways of dealing with the twists and turns that the as-yet-undiagnosed endometriosis threw my way. Somehow I managed to get straight As in school. I stayed out of trouble. The number of people who had a decent understanding of just how much pain I was living with was fairly limited. Essentially, I muddled through and it was very difficult.

Once I was diagnosed with endometriosis in 1992, I finally had a name for what had been going on for all those years. I had validation that I really did have a real medical condition. Some of the insensitive remarks I’d heard over the years (i.e. “just grin and bear it”) began to roll off my back more easily. I had known all along that I was sick. Now, however, I had a name for it. This empowered me to find other patients like me (via a local endometriosis support group). This was a massive source of support for me. Finally I knew people who understood!


I began to make trips to the university medical library to read articles about endometriosis in medical journals. Go ahead. Call me a dinosaur. You see, I couldn’t just look endometriosis up on the Internet back then. Not an option! (Yes, kiddos… there was life before the Internet. I was there. I remember). My local library had NOTHING about endometriosis. I had asked a librarian to help me find information about endometriosis in 1992. There was literally NOTHING in the entire (public) library. So, I began to spend enormous amounts of time at the medical library devouring anything I could find on endometriosis.

To make a long story short, after the decade I’d spent struggling in pain with no answers as to WHY… I now knew the reason and had options for pursuing appropriate information and support. This was an important milestone for me. The diagnosis certainly didn’t offer me a cure (as there is no cure for endometriosis). However, it was a gateway to information and support beyond my wildest dreams.

When I got married and moved to a different community, I started an endometriosis support group. I had been attending monthly meetings in the two cities I had lived in between 1992 and 2001. From 2001 through 2008, I was a support group leader in my area. Starting a support group from scratch was a lot of work but it was a labor of love and I got to meet many women like me.

In 2008, I began writing a blog. Since then, I have primarily focused my time for endometriosis-related work online. If you’re a regular reader here, you know I write about other topics too… but, in many ways, endometriosis was the topic that really drove me to begin writing a blog in the first place.

As Endometriosis Awareness Month draws to a close, I just wanted to thank each and every one of the wonderful people I have met online for your support, encouragement, and kindness. While I am sad that I didn’t get to do all of the things I wanted to this month, I keep reminding myself that endometriosis awareness is a year-round effort. I may not have accomplished what I had wished within the month of March but there will be time in the future to continue the advocacy work.

GoPetition


Finally, for those of you wondering about the endometriosis awareness petition, I absolutely have not forgotten about it. When the offline crisis I am managing calms down, I am looking forward to using that petition for the cause. If anyone has any examples of media coverage on endometriosis that contains misinformation, myths, or confusing wordings… please let me know. You can post the links in comments to this post. Don’t worry. I won’t publish those comments. (All that will do is give more air time to the misinformation). However, if you post the links in blog comments to this post, I will see it and it will come in handy going forward once I am able to tackle that project. So, please keep signing and sharing that petition link as widely as possible. We’ll be putting it to good use in the future. Thank you!

P.S. If you haven’t already, please browse through my previous posts about endometriosis. If you are new to this blog, I have been writing about endometriosis for 4 years now. So, you might find something elsewhere on this blog that is helpful to you. Please take a moment to look around. You may meet other endometriosis patients by browsing through blog comments as well.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis Awareness Month: Reflection Time

4 comments

1 MonaNo Gravatar { 03.30.12 at 3:08 pm }

Good work J 🙂 I think you’ve been v v brave and I know it’s NOT easy dealing with Endo! Thank you for creating this awareness about it . It’s a very difficult job being a woman .. And as I kid with my friends we’re Woe-men 😉 bearing all the possible pain and yet being strong as men !!

2 ShaunaNo Gravatar { 03.30.12 at 4:40 pm }

Jeanne dear,

I’ve been reading and hope that all is AWAP….obviously you’ve got a lot to deal with; I know so well the nagging pain that can chip away at us when we are urgently attempting to apply our energy other areas that need our attention.

Please look for an email, and I pray that you are handling things and also making sure to take care of yourself. Any extra on top of Chronic Pain is a sure energy-drainer.

Gentle Hugs honey—-<3

3 AmandaNo Gravatar { 03.31.12 at 4:12 am }

Jeanne *hugs*

I hope the offline issue resolves itself soon xx

As for posting in Endometriosis Awareness Month… well I haven’t managed it either! But you have such a wealth of information on here that I’m sure anyone dropping by from a web search on Endometriosis will find far more than they could in other places!

I find it even more amazing than I ever did that you are able to campaign for so much when you have so many things to deal with. Since my pregnancy I’ve found another badly understood condition to campaign for and there is just so little time to do it when you have a family. You are amazing, Jeanne, and I love you lots. Take care and hope to catch up properly soon x

4 JeanneNo Gravatar { 04.16.12 at 1:00 am }

Mona:

Thank you for your feedback. I’m normally much faster at replying to blog comments but an offline situation has been monopolizing my time. Sending positive energy your way!

Shauna:

I haven’t seen an email. If you sent one, could you please resend it? As messy as my inbox is (and it’s downright scary), I’ve been watching email closer than ever because of the offline crisis. For whatever reason, I haven’t seen it yet. Thank you for the support. It’s been really wild lately. Let’s just say that 2012 is off to a rough start. Yes, self-care is the name of the game right now.

Thank you. Likewise!

Amanda:

Hugs back to you. I hope so too.

Thank you for your kind words. As sorry as I was not to be able to do Endometriosis Awareness Month as usual, I ended up making peace with it all. The fact that it’s a year-round thing for me to work on helped me deal with that aspect.

You are amazing and I love you lots too. Yes, me too. xo

~~~

Jeanne

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