luludi: (endo: hot water bottle)
[personal profile] luludi posting in [community profile] endometriosis
The top portion of this post is a repost from another source. Unfortunately, I no longer remember where it came from, but I am posting it here because I think it explains endo rather well.

MY NAME IS EMDOMETRIOSIS


"Hi. . . My Name is Endometriosis, and I'm an invisible chronic illness. I am now velcroed to you for life. Others around you can't see me or hear me, but your body feels me. I can attack you anywhere and any way I please. I can cause severe pain or, if I'm in a good mood, I can just cause you digestive problems and fatigue.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. I can make you feel anxious or depressed, and I can make you catch every cold and sniffle that comes around. If you have something planned, or are looking forward to a great day, I can take that away, too.

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, hormones, told you are suffering from anxiety or depression, massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you used to do 20 YEARS ago", not hearing that you said 20 MONTHS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret but I guess you already found out). . . the ONLY place you will get any support and understanding in dealing with me is with Other People With Endometriosis."



Welcome to the Endometriosis community here at Dreamwidth. As a fellow endo survivor/sufferer (whichever term you prefer), I understand what you are going through, and at the same time, I don't, because although we may have the same diagnosis, this disease is different for everyone.

There was a bright person who posted something about the attitudes of others towards those of us with chronic pain, and that made me want to share the following:

"If you don’t know me you would not guess to look at me that I’m living with a very painful disease. I don’t talk about it much, but it's there. Because my disease is not visible to the naked eye, some people think it simply does not exist, even if I tell them. This is compounded because I am physically active, I go to the gym, therefore I must be fine. I have seen reactive facial expressions that might as well shout; “but you don't look sick!” Very few people have a true poker face.

I would never assume nor profess I know what’s going on in your body. Even if I had your medical file at my fingertips I would not assume to know your pain. I would feel like a total jerk if I presumed to know how you feel. But that doesn’t stop some people who seem to revel in both their arrogance and their ignorance. Without a medical degree or even knowledge of my full name they assume to know better than I what is going on in my body. That I “look healthy” to them is reason enough to assume I’m lying or deluded about the state of my own body.

You are not me. That means:

. Whatever magazine article you've read or talk show you may have seen does not qualify you to practice medicine.
. Unless you are my partner, a member of my family, or a close friend – you don’t know me.
. Your menstrual cramps and my endometriosis are not the same thing.
. You don’t get to say what I am or am not feeling up to doing that day. You don’t decide what I’m capable of.

If your intention is to educate yourself on my disease, and your motivation is compassion, I welcome your genuine inquiries, and will do all I can to help you understand. Having had this disease for many years, and as one would imagine, I have done a fair amount of research. That being said, please don't ask me what endo is and expect a one sentence explanation. Most diseases are far more complicated than that, and while I appreciate that you care enough to ask, make sure you care enough to actually hear the answer. It has taken me years of reading, research and personal experience to learn the things I have about this disease, and I will not edit and/or condense that for your convenience. You'd be surprised, once I open my mouth to answer, how many people quickly figure out that they really don't want to know.

The Dali Lama once said 'Most of the world’s pain is caused by expectation – both our expectations of others and their expectations of us. Living in expectation is living in hell.'

I have no desire to live in hell, so with very few exceptions, I don’t care what your expectations are of me. Your expectations are your problem, not mine. To be brutally honest – I really don’t give a damn what you think or what you want. You are not a member of my circle, so aside from the respect and dignity I’m willing to extend to every human being, I owe you nothing."


*original post borrowed from Phillip T. Alden in the chronic_pain community on LiveJournal, and edited to reflect my own situation.

Introductions are neither expected, nor mandatory. You may post one if you like, with some details of your experiences thus far with this disease, or you can simply launch right into a rant about this disease and how it has affected your life. You may also post anything that has helped you or anything interesting you find on the subject of endometriosis or chronic pain. As our bodies do not distinguish between one disease and another, you may also post about other factors that affect your life with endo, such as other health concerns or issues which make dealing with this disease particularly difficult. You are also welcome to simply lurk and read, for as long as you like.

I am more concerned with everyone that is here benefiting from the community, whether that is through posting, commenting & supporting others, or by simply reading and taking comfort that they are not alone, than I am about the community being 'fun' or 'active'. I created this community with the intention of creating a safe space to discuss the delicate issues that come with having this disease. I am always open to suggestions and comments, either here or via email. This is our community, and while I will never pressure anyone for posts or 'weekly updates', I want everyone to feel comfortable here, and to know that they can come to me with any concerns, if at any time they start to feel uncomfortable with any aspect of this community. Thanks for reading.

Date: 2010-09-15 08:02 pm (UTC)
erika: (Default)
From: [personal profile] erika
Would you mind if I borrowed some of your language for the community I just started, [community profile] pcos_support?

Date: 2010-09-19 05:31 am (UTC)
erika: (Default)
From: [personal profile] erika
Um, just kind of specifically the format. Which I kinda already did, but hopefully not in a way as to upset you. I just found what you wrote really informative.

Date: 2010-09-19 04:24 am (UTC)
erika: (Default)
From: [personal profile] erika
I personally suffer from an invisible disability [triple depression] so the spoon theory very much applies to me, which is why I didn't really think twice about linking it, but you're correct that it doesn't really apply to PCOS.

That's a good point--PCOS is definitely not as disabling as many other diseases. My thoughts on including it there were basically to give more people the information about spoon theory and also because many people have comorbid conditions, including depression, anxiety, CFS/ME, endometriosis, etc, but I will change the comm info to reflect that.

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