Chronic Illnesses of Millions of Women Left Untreated

Cosmopolitan magazine today published a stark and disturbing article about one woman's fate in the hands of modern medical treatment-givers. Here's the link to the distressing article: https://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/.

Brea was eventually diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) in the United States. No longer able to read and write, she began an iPhone video diary to document her experience.

Her documentary, "Unrest," which is out now in select theaters and will be on iTunes next month, features that footage, along with interviews with other severely ill ME/CFS patients, which Brea conducted from her bed via Skype. It provides a harrowing look at what it’s like to live with this one poorly understood, incurable disease that’s estimated to affect about 800,000 to 2.5 million Americans.

Many women also suffer from other invisible chronic diseases — from fibromyalgia to vulvodynia to interstitial cystitis to migraine — that have historically been seen as psychosomatic and remain poorly understood.

Interested in more discussions like this? Go to the Women's Health Support Group.

@lioness

@horselover7216 Why did you get so bad you wanted to die? By not getting the nutrition your body needs that is what you would do. COnsider all those in your life ,parents,husband,kids Loved one I had to give nutrition by tube to alot of people who couldnt eat from diseases or surgerys gone wrong. If your healthy why would you refuse food ?

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I didn't because off anorexia. I want too die too but not why.
Getting (yeah... Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this... 😩

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@horselover7216

I didn't because off anorexia. I want too die too but not why.
Getting (yeah... Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this... 😩

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@horselover7216 I feel so bad for you I wish I could wave my hand and your problems would disappear . You said you anorexia? Have you told your psychiatrist this? Somewhere someone has to have done research into this and found a solution .

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@horselover7216

I didn't because off anorexia. I want too die too but not why.
Getting (yeah... Forgot what I was saying😐)
Getting no help 😭
Think it's encephalitis causing this... 😩

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@horselover7216 Can we talk about bullies? You mentioned this. The thing about bullies is that they want to make you believe something about yourself that makes you feel bad. I know when you are young, it's hard to understand what they are doing and you start believing what the bully says about you. A bully is a person who feels bad about themselves, and they only feel better if they can be powerful and make someone feel worse than they do.

When you get into a crisis, you might still be thinking and believing bad things about yourself. Most people won't see you that way, they will want to see the good in you. Bullying was a hard thing for me in my life too. I grew up very shy and picked on. I couldn't separate in my very young mind the pain of teasing and physical bullying, and when I had to go to the doctor or dentist for something that was going to hurt, I developed a fear of medical people. To me it was just more bullying and my mom's explanations just minimized my feelings and she teased me for being scared. This fear controlled my life and stole my confidence in everything. I didn't feel safe. When I was 5, it almost cost me my life when I was trying to get away from my brother who was going to hit me. I rode my little bike as fast as I could to get home, and stopped across the street from my house, looked both ways, and then rode my bike across the street. There was a car coming that I didn't see, and it screeched to a stop within a foot of hitting me. I got no sympathy for my fear and I was punished and my brother was not. My parents believed it was my fault and they didn't talk to me about that. As a 5 year old, I didn't know how to process that fear and I carried this burden for many years. It was years later as an adult that I realized I did not have glasses when I was 5, and it wasn't my fault. I was nearsighted and couldn't see the car in the bright sunshine and because of the stress of running from fear. I don't know who saved my life that day, but I am grateful, and I probably gave them a horrible scare. So I grew up in survival mode and trying to be invisible to my siblings. I worked hard in school and my siblings thought I was making them look bad by being good at school and well behaved, so this pattern of jealousy just continued until I was able to get away from home and out on my own.

I still carried these fears inside, and 3 years ago, I had to face my biggest fears because I needed spine surgery. I had been hurt in a traffic accident 20 years earlier, but I told myself I would be OK. The disc in my neck deteriorated and I had bone spurs growing into my spinal cord. When I realized that I really was hurt in the car accident and it caused this problem 20 years later, it brought back the subconscious fears of the day I almost lost my life at 5 years of age. I didn't know that was feeding my anxiety and panic attacks. I worked through those feelings and it stopped the extreme anxiety that I had been having about spine surgery. I got myself through all of it by using my creativity and music to calm my fears and I let myself feel everything. I had to stop thinking like a 5 year old. I was grown up now, and that thinking about fear and pain avoidance wasn't serving me well. I overcame all of it, and that is why I am here to teach others how to address their fears. The first thing you do is make friends with your fear and figure out where it came from. No one is born afraid. This is all learned behavior, and you can chose to unlearn it. It is an awful burden to carry. Let go of other's opinions about yourself and reach out to people who do care about you and who have your best interest in mind. For me, my best support came from friends, and from loosing myself in creativity that healed my soul. For everything that I accomplished in my art work and paintings, I believed more and more in myself and my abilities. It was work to develop talent, and no one could take the credit for that from me.

I believe that you want to get better. Anorexia seems to be the way that you are punishing yourself. I want you to know that the people who are here on Connect are helping others out of their own love and compassion. Fear and love are opposite emotions. I have heard it said that love is letting go of fear. I know that it is true. You have to love yourself enough to let go of the bad stuff, and it is hard to do that, but it is worth it to live with love and self forgiveness. We all carry those burdens until we figure out how to let them go. This is what happens as you get older if you question the things that you believe in that are holding you back.

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@jenniferhunter That was nice of you to tell this story from your past You where brave then and now ,not to let other people define you

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@lioness

@jenniferhunter That was nice of you to tell this story from your past You where brave then and now ,not to let other people define you

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@lioness Thank you. I think we can lead by example and there are lessons everywhere in life if we are willing to receive them.

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Hi,
I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore... Not even emotions.
I went from out off control anger, too nothing...
I can just shut my eyes and just kind off drift off...

How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

How do go from pure anger, too barely anything..

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@lisalucier

@horselover7216 - if you are not feeding through the tube, are you now eating regular solids, etc.?

I thought this thread on starting with a new specialist might be of interest to you and give you some ideas for interacting with your advocate/medical team https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/.

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I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore... Not even emotions.
I went from out off control anger, too nothing...I can just shut my eyes and just kind off drift off...
How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

REPLY
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