Misinformation in the Gastroparesis Community: Closing the Rift and Stopping the Fear

There has been so fighting in the Gastroparesis(GP) Community. I have been bullied myself since April - and maybe a bit before that. I want to say that support groups are not something to make a power play on. If you are looking for fame and glory, support groups are not the way to go. I know I've posted basically touched on the same thing in another blog article already, but wanted to repost it.

Seven to eight years ago, there was hardly anything online about the GP Community, so a handful of us made groups and pages. We wanted to spread more awareness. And, I have had my blog since 2008. We wanted to make a safe place for GPers to vent, learn about their illness, stay positive, and help the newly diagnosed.

I have no idea what's been going on lately, but there is SO much negativity in the GP Community. People are scared to post in groups for fear of backlash. People are being bullied based on their opinions and beliefs. People are talked down to or ignored. This is NOT what the Community is about. It's embarrassing because other Communities, like the cancer community, has noticed there's something not quite with our own Community right now. That is just so devastating.

Our Community that we worked so hard to build up is a laughing stock to other support groups in other areas.

We need to do better. We need to treat each other with respect. You don't have to like someone, but you can respect them. People are sick enough without this mess. Not only that, but the bullying needs to end. People should not be scared to post, voice their opinions for fear of being shut down and banned, or being ganged up by a group of people. How can people learn about their illness or ask important questions if they are too scared to post? That is NOT what I envisioned when I helped start this Community.

No one should be living in fear. I've been having panic attacks while logging into Facebook, because I honestly don't know how I'll be attacked today. I am really stressed out and anxious, which is effecting my health in a horrible way. I have been too sick to do much of anything. The attacks from people will tell me it is in my head, in addition to blaming me for the divide in the Community. It seems like it should not bother me, but when you are constantly beaten down daily, it really starts messing with your psyche. I block them, but it still hurts. My feelings are so hurt and my heart is broken. I have been crying because I am so sick at this moment, but isn't that always the way? People kicking you when you're down?

There is a giant rift in the GP Community. It has been blamed on me several times. I have NOTHING to do with that and it breaks my heart that this is happening. I would never in a million years try to dismantle a Community so important, especially since I helped build it up from scratch. We need to heal as a community and get back to where we were. We need to knock off the negativity and get back to the original idea that some people have lost sight of: GP Awareness.

All of these posts about selling things, let's say vitamin shake mix as an example to make money. People seem to be losing sight of the main message - to promote and educate about gastroparesis, because the more awareness will lead to research and hopefully a cure. It just seems like the GP Community is losing sight of that message too.

We should be helping to guide the newly diagnosed who are terrified. There is SO much misinformation out there about Gastroparesis, that one person approached me and told me she was going to die because GP is a death sentence. She really was frightened because she read on the Internet that GP = instant death. I comforted her the best I could, and I hope it helped. So, now you have to be careful when you look at things about GP and question them. That annoys me too, that there is A LOT of misinformation out there.

My dream is to see all of the Gastroparesis groups work together, since we should have a common goal, but I do not see that happening. Some of the group owners have their own agendas. That saddens me but it's up to them. I just know that I'm trying my best, here.

Image taken from: http://www.unityofdelraybeach.org/images/unity-hands1.jpg



The abuse and bulling needs to stop. PERIOD! I know I'm not the only one having this issue. It should NOT exist in this Community - we are sick enough without getting worse from Facebook drama. I've kept my mouth shut for a REALLY long time, but I can't stand by anymore. I need to speak up...because I'm not the only one who is going through this. I just don't see how people can advocate for GP but turn around and knock GPers down, especially when they mean well and want to help. Not to mention, I want to stand up for the Community and see if I can help heal and repair the damage.

Well, please know you're not alone. If you are being bullied, feel free to inbox me and we'll talk.

“They will hate you if you are beautiful. They will hate you if you are successful. They will hate you if you are right. They will hate you if you are popular. They will hate you when you get attention. They will hate you when people in their life like you.

They will hate you if you worship a different version of their God. They will hate you if you are spiritual. They will hate you if you have courage. They will hate you if you have an opinion. They will hate you when people support you. They will hate you when they see you happy.

They just hate.

However, remember this: They hate you because you represent something they feel they don’t have. It really isn’t about you. It is about the hatred they have for themselves. So smile today because there is something you are doing right that has a lot of people thinking about you.”

― Shannon L. Alder

What the Gastroparesis Groups Are Fighting For

I wanted to write this article to show the fallen Gastroparesis Warriors that we have lost, to not only honor them, but to bring awareness to gastroparesis, and also to remember what we as gastroparesis sufferers are fighting for. We need people to listen to us that we're sick, that we have gastroparesis, and that we don't have enough awareness, research, to even get a cure. I feel like we're screaming but no one is listening. WE NEED YOUR HELP!

If you are a group owner and/or an administrator of a gastroparesis group, please join Gastroparesis Alliance: https://www.facebook.com/groups/gpalliance/ so that we can talk about how to unite and have our voices heard. We should be working together, not against each other. Most gastroparesis (GP) groups have the same goals and I'd love to have discussions with you on how to proceed on working together towards our common goal. We can talk about running awareness events together, or even bringing our group members together to talk and meet each other. We need to remember that people can be a part of a group and also join another group. It doesn't mean that the group they are in is any lesser of a group, it just means that there are more people who may be qualified to answer questions that you or I cannot. We should work together to help people in the gastroparesis community as well as spreading awareness so that we can inspire research and eventually a cure.

Every gastroparesis group is important and I want to take the time to thank people for making groups that others can join to find answers, be able to vent, and to be validated. Some people do not get that validation from their family, friends, or even their doctors. When I was first diagnosed, my family and friends thought it was all in my head. I cannot tell you how many friends I lost because of my illness. Chronic illnesses like gastroparesis are very isolating and these groups that we have started are many people's only outlet about their illness. So, to all of the group owners and administrators, thank you for doing what you do daily. It's a very thankless job and a very demanding one. However, you ARE doing something important and you may not realize how many lives you touch on a daily basis. The running of groups themselves are very demanding, but thank you for being selfless enough to start one and to help people. People are thankful, even though they might not be able to express it, but I think it is an amazing feat considering all of us are sick ourselves. So, on behalf of myself and my family, I want to thank each and every one of you who do this and encourage you to keep doing it. You never know how much you might help someone, or even stay them from suicide. Each group is important and I believe that is why we should work together.

We really get so upset...there are no words, when we log into to our GP Community and realize that some of our members died overnight. It makes it hard to log in ... I'm honestly scared to get on the computer and log into Facebook, terrified of finding another green candle (a green candle, for those of you who may not know, signifies that someone in the gastroparesis community has passed away. It's our way of showing respect). We really need to make our voices heard. If we are going to get anywhere with awareness for gastroparesis, we need to team up as groups and work together. According to Aesop's fable, which has a wonderful moral to share about this very same subject, which can be found at:(http://fablesofaesop.com/the-father-his-sons-and-the-bundle-of-sticks.html,

"A certain Father had a family of Sons, who were forever quarreling among themselves. No words he could say did the least good, so he cast about in his mind for some very striking example that should make them see that discord would lead them to misfortune.

One day when the quarreling had been much more violent than usual and each of the Sons was moping in a surly manner, he asked one of them to bring him a bundle of sticks. Then handing the bundle to each of his Sons in turn he told them to try to break it. But although each one tried his best, none was able to do so.

The Father then untied the bundle and gave the sticks to his Sons to break one by one. This they did very easily.

'My Sons,' said the Father, 'do you not see how certain it is that if you agree with each other and help each other, it will be impossible for your enemies to injure you? But if you are divided among yourselves, you will be no stronger than a single stick in that bundle.'

Moral

In unity is strength."

For those of you who are suffering from grief because you've lost someone who meant a lot to you, I have an article for you to read that may make you feel a bit better: http://www.emilysstomach.com/2016/04/losing-loved-one-to-chronic-illness.html.

I hope that you'll join this important cause. I really need you, the gastroparesis community really needs you. The more voices we have, maybe someone will listen and help us. No one should starve to death.