Sunday, February 1, 2015

Be Heard!

There, I have said it. I am not embarrassed -- and the world did not end.
When I got up this morning, I saw a post in my feed from a lady (maybe the sweetest lady on the planet) who was back in the hospital due to complications from GP and other medical issues. She was apologizing for "failing." I read posts like this every single day, all day long -- posts from people who feel as if they are failures or as if they somehow need to apologize for not living up to other people's expectations of them. These are people who try to hide their condition from friends and family; who eat when they are out at social gatherings, even though they know it will cause them pain, so that they won't upset other people; and who try hard to keep from mentioning their illness in any sort of public way for fear of the disdain and harassment that will follow. My heart breaks for them!
I think about what it was like for me when I first got sick, and what it is still like for me now, to some extent. When I was in the hospital, I was so embarrassed about my condition -- about my weakness -- that I would not even let my parents come to visit me. I simply could not be seen like that! I was vomiting, weak, in agony, and almost completely helpless. I was fragile. Yet, I refused medications -- even the pain medications -- because I had to prove that I was not so weak that I had to resort to medications to mask the pain.
Here on Facebook, when I first joined, I would not post or comment in the support groups because I was afraid I might say something foolish. And I never, ever put any kind of GP post on my personal wall. I remember telling my husband that he was not to say anything about how sick I was to anybody. There is too much stigma attached. What was I thinking?
When I posted my story in public for the first time, I panicked about it. I cried, I worried, and I wanted to take it back. I was sure all of my friends and family would think I had lost my mind and would avoid me because of it. Even as recently as last week, I hesitated to post a fundraiser on my wall for fear that it might make my friends uncomfortable, or that it would irritate people seeing it in the feed. We are so afraid of offending others and of appearing to be somehow "lesser" because of our disease! We are so afraid of disappointing others and of not living up to some ideal we (or they) have set for us. But this has to change. This has to change because WE ARE STARVING TO DEATH!
Today, when I get on Facebook, I see my profile picture plastered everywhere. I am on my wall, and in the groups, and on pages, and in the feed. I get so sick of seeing myself some days! But you know what? That is better than the alternative. It is better than where I was 6 months ago -- isolated and alone, trying to deal with this disease without any help and without any understanding, cowering at the thought of "going public." I don't hide this from anyone anymore, and when I am asked about it, I tell the truth. I am writing government representatives, the media, and medical facilities. I am posting in the groups and on my wall -- publicly! I am holding nothing back.
And you know what else? I try to be nice to everyone. (I don't always succeed, but I do always try.) And I will continue to try to be nice to every single individual I meet. I care deeply about people, and I do not want to offend them or make them uncomfortable in any way. But I refuse to apologize to ANYONE for being ill or for addressing my disease in public. I will post on my wall, and I will make it public. I will write anyone who can help us, and give them any sort of personal information they want, if that will help us. I will stand on the street corners and shout it, if that has some value. I will tell my doctor when he is wrong, or not paying attention, or not being helpful. And I will post my stories, my rants, our group and page information, and our fundraiser everywhere possible, for all to see -- without hesitation. I will no longer be made to feel guilty about STARVING!
It is not your fault that you are sick. It is not your fault that your friends, family, doctors, or anyone else do not understand what you are going through. It is not something you should have to hide or be embarrassed about. You do not need to feel guilty because you cannot attend social events, or clean your house, or eat a meal that someone has prepared. You do not need to feel guilty because you miss the family Christmas gathering or your child's recital. You do not need to be embarrassed or feel like a drug addict because you want a medication to help you stand the pain. And you should not have to hide your condition from the world. This is not something minor that is hardly worth mentioning.
And I am not going to be quiet any longer. So, here are the appropriate links. Please share in the groups, and on your walls, and on telephone poles, if need be. Thanks!

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