Facing Endometriosis Awareness Month With Uncertainty…
In many ways, my life – as I knew it – got shattered, for lack of a better term, this past January. My days and nights are now filled with managing a very complex crisis that: sucks my energy, causes immense stress, threatens to take me off track with managing my illnesses, results in emotional upset, has all but isolated me from my many wonderful online friends, and far more.
I have had to carefully walk a very fine line (to avoid burnout and significant exacerbation of symptoms). Making time for basics like sleeping and eating has become challenging at times. It’s exhausting and I look forward to a time when things will return to a sense of normalcy… even if it’s the sort of “new normal” that we in chronic illness circles often talk about. (In other words, I don’t think I’ll ever be the same after the events of recent weeks). I do want some peace and real rest. The reality is that I can’t see this on the horizon anytime in the near future. So I have to pace myself accordingly.
Some of the circumstances I’ve learned of and/or been directly working on have been truly heartbreaking. I have really had to draw on everything I have learned over a period of decades. All of the energy I normally channel into this blog (and time normally spent networking with my fellow patients online) has been funneled into working on this offline crisis.
Today begins Endometriosis Awareness Month. If you have been a regular reader of my blog for awhile, you know that March is normally a very busy time for me because of it. I honestly don’t know whether I will be able to blog for Endometriosis Awareness Month this year. That remains to be seen. To be honest, it’s not looking very promising. Time will tell. In the meantime, I just wanted to take a moment to check in here. I miss talking with you all! I wish I knew when I will get back to a more regular schedule for updating this blog. The reality is that I simply don’t know.
Thirty years ago, my endometriosis symptoms began. Twenty years ago this month, I finally got diagnosed with endometriosis via an outpatient surgery called laparoscopy. After living with endometriosis symptoms (undiagnosed) for 10 years, I was finally diagnosed on March 17, 1992. It may sound strange but I was actually relieved when I finally got the diagnosis in 1992… because I finally had a name for what was happening to my body, I had validation that it was a real medical condition (i.e. I wasn’t exaggerating, “being dramatic”, or “being a wimp” as various people had implied or came out and said to me over the years). My illness was real (as I had known all along). The symptoms that had so often made my life a living hell in the preceding 10 years were attributable to a real medical condition. A condition that has treatment options (however inadequate they may be). A condition I now know I share with millions of women and girls the world over. Obviously, I would prefer that endometriosis be banished from the planet and I wish that no one ever again would have to suffer its effects. It was comforting, though, to meet other women (via in-person support groups first and then online) who “get it”.
While I will do everything I possibly can to participate in Endometriosis Awareness Month, I know I won’t have the stamina for it this year that I have in previous years. So, I would like to encourage anyone who is reading this to please check out the many posts I’ve written previously on endometriosis. If you haven’t already signed the above petition, please consider doing so. If you have signed it, please share it… especially on Facebook and Twitter. Anyone who wishes to sign it can do so. We recently topped 1,000 signatures. Let’s keep that momentum going. Let’s get the word about about endometriosis!
It is a serious illness that is often marginalized. Patients deserve to be taken seriously. They deserve to be given factual information rather than misinformation. Doctors who dole out misinformation need to be called out on it. Patients dissatisfied with their treating physicians need to seek second (or 3rd or 4th…) opinions. Not happy with your doctor’s handling of your symptoms? Why not do the research to find the best doctor in your area and switch over? Patients deserve to be treated with respect and dignity. Patients deserve doctors who are honest and ethical.
So, if you aren’t happy with the treatment you’re getting… ask around. Network with other women. Determine who might better suit your needs. Rather than reward unethical or uninformed physicians with your health care dollars (and that includes payments made to doctors by insurance companies… not just your out of pocket costs!), take your business elsewhere if you are not satisfied. We each only get one body in this life. It took me some time in my own case to figure out how to best advocate for myself. In time, however, I learned not to waste my time, energy and well-being being treated by doctors who are not a good match for my needs. Doing your “homework” and advocating for yourself are so important!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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