OK guys, I know I haven't posted as much as I would have liked over Awareness Month. I have been doing some work to increases the general public's awareness. Plus of course I've had my really bad days where I couldn't even walk down the stairs the pain was so bad. It got me thinking that I'd love to hear some of your stories of how you've coped with your Endo, when you got diagnosed and what if any treatments you have found useful or have helped you along the way.
If you have something you'd like to share, either leave a comment or if you have a longer piece you can get in touch with me through the blog and we can work putting your stories up for all to read. Highlighting them if you will.
I find great support not only from my Family but also from all of my Endo Sisters and would love to hear from some of you.
One thing I will say is this; It's fine to express your opinion about your experiences but as we all know ignorance of this disease is many people's downfall. So if there are any negative comments on people's stories, they will be removed. I will moderate as much as I can so finger's crossed nothing horrible gets said to anyone (I've had experience with this through support groups, forums etc. People thinking that they're worse than you, you can't be in pain only to find out that they are not a sufferer at all, or that they are being hateful and aggressive.) If anyone encounters any of these issues on this page then let me know immediately please.
We have to put up with a lot of judgement because as I've said before if people could see what was on the inside, actually see the Endo there would be a lot more questions asked as it's visible to them. It's difficult dealing with an "invisible disease" without feeling you don't have a safe enough place to talk it out.
Let me know if this is something of interest. If not I shall have another post up soon.
Stay strong.
7 comments:
I've encountered an awful lot of negativity of late also with people trying to tell me I can't be in as much pain as I am in. It just shows the ignorance of individuals. If someone is genuinely suffering they wouldn't be saying aggressive things to us.
Many of us have lived most of our lives trying to convince Doctors and other professionals plus at some time friends and family just how much pain we are actually in and to try compete with your Endo Sisters is disgusting. I'm sorry if that sounds harsh it's just my opinion.
I really enjoy your blog and don't worry about the posting's. I think we all understand that crappy days can hit without notice.
Look forward to reading more :-)
My wife has suffered from this disease for as long as I've known her (over 32 years now) and not once have I ever thought "oh she must be faking it or messing".
People are ignorant. She has even said to me about her support groups of late that there is a lot of "trolling" going on so I would pay any mind to these so called faceless people.
They are normally just trying to get a rise out of good people like yourself. I would promote your blog even more and stay the upbeat positive person that you come across as.
Much love and light from both of us.
I'd love to share my story with you guys as I believe Awareness is the key to understanding what we Women go through with Endo.
I hope to hear from you soon Alessandra. Keep up the good work.
Thank you Michelle for taking the time to comment. I don't think your comment sounds harsh at all and as you pointed out it is your own opinion. That's what I'm trying to get going here. People's views, stories and above all opinions. I am just trying to prevent a repeat of other groups and forums in which I have heard of or seen people deliberately being horrible, saying truly awful things just to hurt and offend my Endo Sister's.
I hope you are keeping well.
Blessed be my Endo Sister.
Hi Chloe! Thank you so much for your interest. If you want to type up your story I am working on a separate link for women and men to share their own experiences with Endo either from the sufferer's perspective or from a supporter's one.
If you know of any one else who would like to share please feel free to pass on.
Blessed be my Endo Sister.
Good day Richard and Annette and thank you very kindly for your comments. This "trolling" phrase has been brought to my attention as recent as last week and I could not believe that this is actually happening frequently to people. It's truly awful in this day and age that bullying continues when people are trying to support each other, share their belief's and opinions.
Thank you again. I do try to remain positive as hard as it can be at times, we all know that. It's sometimes the little things like holding out for hope that helps you get through the tough times.
I wish you and your wife all the best and hope to hear from you again on the blog.
Stay well.
Blessed be.
Hello there. This is my first comment here. I couldn't help but feel your frustration from the negativity you have been receiving. Is it from another source i.e. Social media, Twitter, Myspace, Facebook? I have been reading your Blog for quite some time now and I really enjoy the posts. I think we all understand how debilitating Endometriosis can be, just living with it sometimes is difficult. I hope you keep up the good work and I get to comment again. You are right though if only people could see, they'd run screaming down the street lol.
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