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Saturday, August 26, 2017

Spreading Positivity in the GP Community: Healing the Rift

I have touched on this before but I thought it was worth repeating. There are a lot of diverse groups that make up the gastroparesis community on social media. There are so many different variety of groups, so that you can usually find a support group that works for you and your needs. This is a very positive thing because gastroparesis can be very isolating. There are times where I feel like I am on house arrest. For instance, it is really hard for me to go places and do things with my friends/family because I vomit so frequently. Some of my friends will start vomiting if they see me do it, so that does not really work out. There are SO many positives to gastroparesis groups:

1. People know where you are coming from
2. People believe you so you do not have to constantly defend yourself
3. You get the support you need from a group set going through the same things
4. You can ask and answer questions
5. You make new friends
6. You get involved with the gastroparesis community
7. You do not have to censor yourself, because there is no such thing as TMI (too much information) in a support group
8. You can join multiple groups (it is better to do this since groups have specialities or if you want different perspectives)
9. It is nice to connect with others, especially if you are alone
10. You have the ability to help the newly diagnosed and share your experiences with them


Those are the positives that I love seeing in groups. The gastroparesis groups can be welcoming and inviting but you might have to search around until you can find one that is the fit for you. Usually, people in groups are willing to give suggestions to direct you to other groups if you feel like the one you joined is not the fit for you.


I have a list of gastroparesis resources here: HERE.


Now, I want to address something else, the negative sides of gastroparesis groups and by extension, the community. There seems to be a huge rift in our gastroparesis community at the moment and it seems to focus on each of the gastroparesis groups doing their own things. It does NOT matter how the rift in the groups began, who is at fault, because ultimately, we are hurting our main goal - which is gastroparesis awareness, and most importantly, each other.

Our community needs to heal and come together to work together to try and fight doctors, nurses, and others who think that gastroparesis is NOT real, despite test results that tell the contrary. It is a waste of our energy to fight one another when we should all be working towards a common goal. Instead, we are shooting ourselves in the foot and before long, no one is going to take us seriously. With all of this squabbling and fighting amongst each other, we are losing sight of the real message: to spread awareness about our illness. It's not a competition and we do have a common goal.

Therefore, this needs to end.

We are better than this. We need to work on making sure people know what gastroparesis is, how it effects so many, their quality of life, and to fight for those who barely have the energy to fight for themselves. We also need to dispense with the blame game. This fracturing is devastating to our community. Furthermore, even people in other support groups, like the cancer and stroke groups, are inquiring as to what is going on with the gastroparesis community. This has gotten out of hand and needs to stop. We cannot take the community out of gastroparesis community.


You do not have to like someone, but you CAN respect them.


All of the cliques, the in fighting, back biting, passive aggression - ALL OF IT, in groups needs to end. That is NOT what support is. It is hurting our cause instead of helping it. All of us have worked hard to get the community where it is today. It's taken a lot of work from so many people, and it is a very thankless job which we do for free in our spare time. We all do it because we love this community but also because it is important for us to find better treatment plans, and hopefully, a cure. We have lost THIRTY-FOUR people in the past two to three months. Let that sink in for a minute. We should honor those fallen warriors by continuing to promote awareness for gastroparesis.


No awareness, no research, no cure.


This giant rift in the gastroparesis community needs to close. No one needs to take sides. Instead, take the side of gastroparesis, and fight with everything you have to spread awareness, spread joy to those who are feeling down, spread friendship to those with this illness who are isolated. There are so many positives we could be doing! The gastroparesis community needs to come together and help each other out.

I would be happy to promote other groups, pages, etc, just like I have always done. To me, getting the word out matters and politics does not. I just do not understand how this happened in our community. But, I do want to rescue it and work with others before we lose all credibility completely. Like I previously stated, we already have a hard enough time fighting doctors, hospitals, and everything else. We all should look out for one another. We are a strong community, but we need to heal and move forward.




Image taken from: http://www.sanluisobispo.com/living/family/linda-lewis-griffith/article39430086.html





According to Senior Outlook (http://www.sanluisobispo.com/living/family/linda-lewis-griffith/article39430086.html,

"Even good relationships can be damaged by an argument, jealousy, misunderstanding, insult, rumor, or buildup of small resentments.

Sometimes things blow over quickly, but other times the upset lasts for years or even indefinitely. As time passes, people may even forget why they originally became upset.

Meanwhile, discord eats away at the peace of mind of those involved, and that affects the body. Negative emotions can release adrenaline and cortisol, chemicals useful in short-term fight-or-flight responses but destructive to the immune system when circulated in the bloodstream for extended periods. Augustine of Hippo (St. Augustine, 354–430 A.D.) wrote, 'Resentment is like taking poison and hoping the other person dies.'

Further bodily damage can be wrought. Many believe the mind delivers to your body whatever you speak, think, or otherwise focus on. If true, what bodily symptoms might result from expressing such thoughts as 'He’s a real pain in the neck/butt,' 'She makes me sick,' or 'I’m so sick and tired of that guy?'

Friends surrounding this ailing relationship are affected, too. After a friendship breaks up, party hosts may rightly invite both feuding friends; but then they may be asked awkward questions regarding whether the other person plans to attend. If both individuals attend anyhow, they may avoid or confront one other, making others uncomfortable.

What about innocent bystanders within the family—parents, children, siblings, and grandparents? Some family members feel forced to choose sides if two of their children or siblings aren’t speaking to each other. And how do you manage family holidays together? A schism within the family destroys peace.

All these unpleasant side effects are ample incentive to try to mend the torn relationship and restore peace and harmony between the two of you and among those dear to you both.

Writing a reconciliation letter is a good first step. Deliver your truth with compassion. Start with a sincere compliment or other positive statements; then create an emotional connection by mentioning what you’ve always enjoyed about each other or what you once enjoyed doing together—times you both treasured.

Acknowledge that no two people ever perceive or recall a situation in exactly the same way. Truthfully but kindly describe the situation—as you recall it—that you believe has caused the current upset. Avoid starting sentences with 'You,' such as 'You said,' as these statements seem accusatory. Instead, describe your own feelings in response to circumstances at the heart of the upset, e.g., 'I was devastated when I heard that statement made in front of everyone at the party.'

Accept responsibility and apologize for any part you may have played in the upset. Then ask for and/or extend forgiveness—whatever is appropriate. End by expressing hope of reconciliation, or at least an agreement to 'live and let live,' for personal peace as well as harmony among affected family and friends.

To allow the other person a chance to offer a considered response, not an emotionally charged one, mail your letter. Don’t ask for signed proof of delivery; this could be interpreted as a pressure tactic or power play. Just write 'Personal & Confidential—Please Deliver Unopened' to the right of your return address to help ensure privacy.

If you receive no response within a month, send a brief note stating you hope the note finds him or her well, you care about your relationship, and you’re hoping to hear from him or her regarding the letter you sent on (date). Consider attaching a duplicate of the letter, just in case.

With that, you’ll know you’ve made your best peacemaking effort; accept the outcome. Forgive yourself, if you haven’t already, for anything you might have contributed to the upset, because this, too, is healing. Finally, should you find yourself face to face with the other person, behave as if the upset never happened in the first place. This makes it easy, if the other person so desires, to gracefully resume that good relationship, without embarrassment or any need to explain.

And if, in the future, any resentment toward the other person creeps back into your thoughts, immediately forgive him or her mentally, and then once again forgive yourself. Repeat as often as needed."


The community needs to band together once more and fight for one another, not fight each other.

2 comments:

Linda Bryan said...

If my words or my neglect has caused harm to anyone I sorely regret it. Please forgive me.

Emily Scherer said...

Linda, I think you a perfectly fine. Anyone who apologizes like that is NOT the person the article is referring to! Take care. <3