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Monday, August 28, 2017

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.

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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

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.

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According to Senior Outlook (,

"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.

Hirschsprung's Disease

One of my friends was recently diagnosed with this disease, and I have to admit that I had no clue about it. I knew about little to no colon motility, but I never knew that this had a name. There are lots of things that can slow the colon or stop it working completely, like scleroderma, Ehler Danlos Syndrome, and Gastroparesis. I wanted to do some research on Hirschsprung's Disease to see what information I could find to help others who may be suffering from the same thing.

According to the Atlas of Pathophysiology (,

"Hirschsprung's disease, also called congenital megacolon or congenital aganglionic megacolon, is a congenital disorder of the large intestine, characterized by absence or marked reduction of parasympathetic ganglion cells in the colorectal wall. Hirschsprung's disease appears to be a familial, congenital defect, occurring in 1 in 5,000 to 1 in 8,000 live births. It's up to 7 times more common in males than in females (although the aganglionic segment is usually shorter in males) and is most prevalent in whites. Total aganglionosis affects both sexes equally. Females with Hirschsprung's disease are at higher risk for having affected children. This disease usually coexists with other congenital anomalies, particularly trisomy 21 and anomalies of the urinary tract such as megaloureter."

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According to the Mayo Clinic ('s-disease/home/ovc-20214664), the symptoms of Hirschsprung's Disease are included but not limited to,

"Hirschsprung's (HIRSH-sproongz) disease is a condition that affects the large intestine (colon) and causes problems with passing stool. The condition is present at birth (congenital) as a result of missing nerve cells in the muscles of the baby's colon.

A newborn who has Hirschsprung's disease usually can't have a bowel movement in the days after birth. In mild cases, the condition might not be detected until later in childhood. Uncommonly, Hirschsprung's disease is first diagnosed in adults.

Surgery to bypass or remove the diseased part of the colon is the treatment."

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However, even though it is rare or uncommon, adults can very much get it as well.

The symptoms, according to Mayo ('s-disease/symptoms-causes/dxc-20214666), are,

"Signs and symptoms of Hirschsprung's disease vary with the severity of the condition. Usually signs and symptoms appear shortly after birth, but sometimes they're not apparent until later in life.

Typically, the most obvious sign is a newborn's failure to have a bowel movement within 48 hours after birth.

Other signs and symptoms in newborns may include:

Swollen belly

Vomiting, including vomiting a green or brown substance

Constipation or gas, which might make a newborn fussy


In older children/adults, signs and symptoms can include:

Swollen belly

Chronic constipation


Failure to thrive


It's not clear what causes Hirschsprung's disease. It sometimes occurs in families and might, in some cases, be associated with a genetic mutation.

Hirschsprung's disease occurs when nerve cells in the colon don't form completely. Nerves in the colon control the muscle contractions that move food through the bowels. Without the contractions, stool stays in the large intestine.

Factors that may increase the risk of Hirschsprung's disease include:

Having a sibling who has Hirschsprung's disease. Hirschsprung's disease can be inherited. If you have one child who has the condition, future biological children could be at risk.

Being male. Hirschsprung's disease is more common in males.

Having other inherited conditions. Hirschsprung's disease is associated with certain inherited conditions, such as Down syndrome and other abnormalities present at birth, such as congenital heart disease."

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According to MedicineNet (,

"The cause of Hirschsprung disease is due to nerve cells that are supposed to grow along the intestine and reach the anus, but do not because they stop growing too soon. Hirschsprung disease (HSCR) is a congenital (present at birth) disease of the large intestine or colon. It is one type of birth defect. People with the disease do not have the nerve cells in the intestine required to expel stools from the body normally.

Some people inherit the disease, and others have mutations in several genes. In about 50% of people with Hirschsprung disease, researchers and doctors do not know what genes cause it.

Your primary care doctor will refer you to a specialist in digestive disorders called a gastroenterologist, to diagnose the condition. Diagnosis for Hirschsprung’s is based on a physical exam, medical and family history, symptoms, and tests, for example, a digital exam.
Surgery is the treatment for this life-threatening disease (procedures include pull-through for infants and ostomy (An ostomy refers to the surgically created opening in the body for the discharge of body wastes) for toddles and older children).

After healing from surgery, your child's bowel movements may become normal. But surgery doesn't cure Hirschsprung disease. Some children/adults will have bowel problems – like constipation or fecal incontinence (“accidents”) – off and on throughout their lives.

Symptoms of Hirschsprung disease in toddlers and older children may include:

Not being able to pass stools without enemas or suppositories. An enema involves flushing liquid into the child’s anus using a special wash bottle. A suppository is a pill Placed into the child’s rectum.

Swelling of the abdomen.

Diarrhea, often with blood.

Slow growth.

Intellectual disability"

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According to Science Direct (,

"Some patients reach adulthood without a diagnosis for this disease. Typically, patients go to the doctor with a long-standing history of constipation requiring frequent laxative use.11 The current frequency of the disease in adults is unknown, especially since HD is an overlooked and misdiagnosed disease in this age group. ...the diagnosis of HD is supported by barium enema studies, anorectal manometry and rectal biopsy.

Imaging studies such as computed tomography (CT) and barium enemas are usually accepted for evaluation of chronic constipation, which is a common disorder in adults. Our patient underwent CT due to the unavailability of a barium enema study, but CT is a more expensive method.

The anorectal manometry, even though not contributing in the present case, is an ancillary test of the utmost importance, since the presence of the rectum-anal reflex in this exam usually rule out the diagnosis of HD.

Several procedures are used to manage this disease after childhood; currently the option of choice is the surgical procedure of Duhamel. Late diagnosis contributes to the need for surgery in more than one surgical time, with ileostomy or colostomy, since the healthy colon is more distended in adolescents and adults compared to neonates and children. Nevertheless, the literature considers as the procedure of choice the Duhamel technique in only one surgical time, which reduces the hospitalization time.

This surgery is considered curative. However, post-operative bowel functioning is not always satisfactory. Enterocolitis, constipation and fecal incontinence represent the main postoperative complications in children. To date, the progression for adolescent or adult patients is not fully clarified yet, due to the small number of reported cases."

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I really hope this will help educate you about Hirschsprung disease. I am still learning about it myself. The research I did says it is more likely to happen with children, but adults I know have it and were just officially diagnosed. After you have a rectal biopsy (because doctors do a biopsy to verify you do have HD), then they might do an anorectal manometry (which is where they stick a balloon up your rectum, kind of like the pelvic floor test). Once all of that has been confirmed, then they might start talking reconstructive pelvic surgery.

I would still advise you to be cautious, do your own research, talk to people who have had it done, and make an informed decision so you will know if this is right for you. Thank you very much to my friend who brought this illness to my attention, because I had no idea this was going on. My heart goes out to all of you who are fighting this on a daily basis.

Thursday, August 3, 2017

Cyber Bullying, the Gastroparesis Community, and Facebook

There has been a lot of bullying going on within the gastroparesis community, a lot of which has been aimed at me. I keep getting harassed, had former friends harass me, my pages, and my blog. My blog has been the crux of this issue a few times. I want to say that my blog is not a scientific journal, so it is not peer reviewed. It's a blog. I've been told that twice by the same person. I have been published in two geological journals, but I do not think the lead count in soil would help any GPers I know.

GP isn't a social club. It's about working together to get the information out there and to help those who have GP. It is not about ganging up on people, controlling groups, pages, etc. It's about support, pure and simple. There are so many obstacles that we have to go through with gastroparesis, we shouldn't manufacture more, we should stand united. We need to educate those who may not know about gastroparesis and what that entails. It's August - GP Awareness Month. We should rally together to educate, not tear each other down. Divided we fall, united we conquer.

I wrote an article that was published in The Mighty last week. You can read it here: and I also have another article on Cyber Bullying: and an article on Suicide and Chronic Illness: because, like it or not, Cyber Bullying can lead to suicide. People in the chronic illness community are already fighting battles and struggles that you may not know about because they don't post online about them. They could be suffering from severe depression, anxiety, and other things. I mean, you just never know!

So, I want to talk about cyber bullying, since I'm experiencing it firsthand, and what it's doing to the gastroparesis community. I also want to help others who may be going through the same things. It's hard being bullied, especially if Facebook won't listen and you don't have any other recourse. I'll share some things I have learned and some tips from an anti-bullying site that I found. We should be building each other up and not tearing each other down. Having gastroparesis is hard enough, and we face enough adversity from doctors, nurses, ER staff, etc, we don't need it from each other.

So, here's what you can do to avoid cyber bullying.

1. Do not feed the troll. What I mean by that is, do not give the person fuel for their fire to keep attacking you. As hard as it is, stay silent. These people crave attention and will try to get it by any means necessary.

2. Block these people. They have no control over your life unless you let them. You are better off without these toxic people in your lives. You ARE important, and don't let these people have control over what you do.

3. Write yourself an email. Every time these people hurt you and you want to say something back, write yourself an email and send it to yourself to get your feelings out. That way, you don't bottle it up and you can get out what you want to say. You don't need to send it to anyone else, this is just for you.

4. Do not be scared. Don't be scared to login to Facebook or wherever these trolls might be lurking. That would be giving them power over you. Don't let them. You're better than that, and like it or not, these people are going to be everywhere so there is really not a way to avoid them.

5. Do not give in. These people want something from you, don't give it to them. Bullies usually won't stop until they can get what they want. I will give an example. This is a popular one - in movies and T.V. shows - bullies want lunch money. They will not stop punching you in the gut until they get it and run off. So, don't give the bullies your "lunch money."

6. Do not stop living your life. The thing with bullies is that they will try to interrupt as much of your life as possible. Do not let them. The world spins on. You should keep living your life and do not let them make you deviate from it, because that is their goal.

I would also check with your state and see what laws they may have in place about cyber bullying.


According to,

"We get a lot of emails, phone calls, and comments on this blog from adults who are being bullied though technology. They stress to us that cyberbullying is not just an adolescent problem. Believe me, we know. We receive more inquiries from adults than teens. We know that cyberbullying negatively affects adults too. It’s just that we spend the majority of our efforts studying how this problem impacts school-aged youth due to their tenuous developmental stage. That said, I thought I would take some time here to give the adults who have been victimized out there some general advice.

First, it is important to keep all evidence of the bullying: messages, posts, comments, etc. If there are ways you can determine who exactly is making the comments, also document that. Second, contact the service or content provider through which the bullying is occurring. For example, if you are being cyberbullied on Facebook, contact them. If you are receiving hurtful or threatening cell phone messages, contact your cell phone company to obtain assistance. Along those same lines, familiarize yourself with the Terms of Use for the various sites you frequent, and the online accounts you sign up for. Many web sites expressly prohibit harassment and if you report it through their established mechanisms, the content and/or bully should be removed from the site in a timely manner. To be sure, some web site administrators are better and quicker at this than others.

Also, please be careful not to retaliate – or do anything that might be perceived by an outsider to have contributed to the problem. Do not respond to the cyberbully except to calmly tell them to stop. If they refuse, you may have to take additional actions. If you are ever afraid for your safety, you need to contact law enforcement to investigate. They can determine whether any threats made are credible. If they are, the police will formally look into it. The evidence that you have collected will help them to evaluate your situation.

You should also take the time to check your state laws. We have discussed some of these laws on this blog and have a summary of many applicable laws here. In Wisconsin, for example, it is a misdemeanor if someone uses computerized communication systems to “frighten, intimidate, threaten, abuse, or harass another person.” It is also against the law to “harass annoy, or offend another person.” See what the laws in your state are to determine if the police should get involved.

If the threats or comments are detrimental to your health, safety, or occupation, you might want to consult with an attorney who specializes in harassment, defamation of character, false light, intentional infliction of emotional distress, or similar types of civil action. A letter sent from an attorney (on law firm letterhead) to the bully may be all that is necessary to get the bullying to stop. The problem with this approach is that it can be costly. I have spoken to some victims who have consulted with attorneys who want a significant sum of money to get involved, even at a basic level. I can only imagine how frustrating this is after experiencing emotional and psychological suffering – and then realizing that you can’t afford to get legal help. Another problem associated with pursuing a bully through civil action is that, even if you are successful and a judge or jury rules in your favor, it can be difficult to determine an appropriate damage amount. I served as an expert witness in a cyberbullying case in the summer of 2008. In that case, the adult victims were being bullied in an AOL chat room. Everyone agreed that what the bully was doing was wrong, but to what were the victims entitled? They had some modest medical bills and could be reimbursed for costs associated with their AOL account – but these losses added up to less than $1,000. And while I don’t know the actual amount, I am sure their legal bills were in the tens of thousands of dollars. They ended up settling for a very small amount – just to make a statement to the bully. Most of us can’t afford to take those actions on principle alone.

In sum, it can be difficult to hold bullies accountable for their actions (for both adolescents and adults). In a country such as ours that values free speech so highly, many people genuinely believe they can say whatever they want, to whomever they want. We know that is not true, but it isn’t clear where exactly the line is. And just because we *can* say certain things, doesn’t mean we should. It’s no wonder that many teens are wrestling with this problem—they see the adults in their lives saying mean and nasty things to others on a regular basis. Do your part to model appropriate behavior and address any hurtful language when it comes up. The kids (and other adults) in your life will hopefully see it, remember it, and act in the right ways."

I know first hand what bullying feels like and it is not the most pleasant feeling. It is so hard to stay silent when people are attacking you left and right. The hardest thing you can do is to keep your peace and not feed into what they want, which is any kind of reaction out of you. Anything you say in your defense will just be used against you later in one form or another, and just give them more fuel for their fire. It is so hard to sit back and watch people defame you, your character, your family, your contributions to the community, or whatever they feel the need to target. It hurts. I know it hurts so much. I have cried over things that were said and done to me.

It hurts so much, and the worst feeling that you feel is powerless. But, you are NOT powerless. You have a lot more power than you know of. By not feeding into this hate, you are breaking the bullying cycle. Be sure to document EVERYTHING! You can keep a file with print outs of what has been said about you, if it was online. If it is through the phone company, save your voicemails. Gather all of the evidence that you can, while you can. You can look up cyber bullying or bullying laws in your state, it varies, but there are legal courses of action that one can take. I would also recommend talking to a therapist to get out all of your feelings regarding the way you are being treated. Your therapist might have some great ideas on how to deal with a bully as well. Just know that you are NOT alone! You do NOT have to go through this alone! You are special, here for a reason, and no one is worth it if all they do is tear you down. You are amazing and in case no one has told you this today, I believe in you.


If your child is being bullied on Facebook, I was sent a wonderful link that will help you protect them. According to The VPN Mentor,

"The Ultimate Parent Guide for Protecting Your Child on the Internet


We see news stories about the impact of technology on our everyday lives all the time these days. Many of us started to think about how technology affects us personally. But how many of us have stopped to think about how it affects our children?

85% of mothers said they use technology to keep their children busy (source).

Kids are receiving their first internet-capable device earlier and earlier. That same study showed that 83% of American households have tablets, and 77% have smartphones (source).

Even in school, technology is abundant. Teachers set homework that requires online research and tools and use apps to manage that homework.

Technology is always adapting and it’s here to stay, but many do not think about the safety risk in terms of cybersecurity. A recent study revealed a startling figure: 68% of parents never check their children’s online activity (source). And that online activity increases year after year.

For a lot of children, the online world is more real than the real world. It is crucial to our children’s wellbeing that we understand what they see online, what is out there, both good and bad, and how it impacts their physical and emotional wellbeing.

The problem, as many of us would eagerly admit, is that we feel we don’t really understand the online world. Instagram, Snapchat, and Twitter are bewildering enough, without even mentioning 4chan and TOR. Furthermore, we don’t feel that we have the technical skills to navigate this complex landscape.

The good news is that it’s not that difficult to put certain technical controls in place to protect your children online. Far more importantly, the best thing you can do to protect your children is to talk to them; set clear boundaries for what and when they access online, but also to be there for your children when they make a mistake, or when they have gone too far. Isn’t that what parenting fundamentally comes down to?

In this comprehensive guide, we outlined eight areas that you should pay attention to as you navigate this complex online world. Depending on the ages of your children, not all of it will apply to you. Think of it not only as guidelines for what you should do now but what you should pay attention to as your children grow.

1. Mobile phones and apps

According to consumer research by Influence Central, the average age that children get their first smartphone is 10 years old. Giving your child a smartphone comes with numerous benefits. A phone is an excellent safety tool; your child can use it to let you know they safely reached their destination, call you for a ride, or call in case of an emergency. You can also use the GPS on their phone to track their location. Knowing that you can always reach your child is a tremendous peace of mind for a parent.

Smartphones, however, can also be misused, and in some situations can make children vulnerable. Because smartphones are personal devices, we don’t often know what our children do on them, or how they use them.

If you’re considering giving your child a smartphone, it helps to have some clearly outlined guidelines in place beforehand, so everyone is on the same page. If your child already has a smartphone, it’s not too late to review the family rules. Demonstrate to them that having a smartphone is a big responsibility.

Implement smartphone rules with your child. Making sure your kids involve you on their phone activities with help keep them safe.

There are many precautions you can take to implement phone safety:

Have your kid sign a smartphone contract before you give them one. Print out a list of cellphone rules and stick it in a public place in your home.

Download parental controls. Parental control apps for younger children enable you to limit your child’s usage, determine their location, and monitor their calls and messages. Apps also allow you to shut off certain functions at different times. For example, disabling text messaging while driving.

Set limits when your child can use a smartphone and for how long each day.

Set a personal example for your child. Don’t bring your phone to the dinner table, and don’t text and drive.

Set up a charging station in a central location in your home. Phones should stay out of your child’s bedroom and they won’t be in use late at night.

You can also install an app to monitor your child’s activity. Keepers is one type of app that alerts parents about harmful, abusive, or suspicious messages, and it includes a tracking device to show your kid’s location in real time.

2. Streaming content and smart TVs

We like to think back to a time when the whole family gathered around the TV to watch something wholesome together. (In reality, many of us probably had a TV in our rooms, and spent many hours watching TV without much guidance from our parents.)

That being said, streaming content has shot up in popularity, and there are more TV shows and movies available at our fingertips than ever before, much of it not particularly appropriate for kids.

There are, however, some great benefits of streaming services. Many feature great, educational children’s programming and documentaries. Most don’t show any ads, meaning that your kids won’t be bombarded with commercial messaging from all sides like they are when they watch regular TV. You can open up an entire world for your children with streaming content – the key is how you use it.

Most of the big streaming content providers have parental controls, some more robust than others. Netflix allows you to set up separate profiles for you and for your children.

Using these tools, you can ensure that your kids only have access to age-appropriate content. Because Netflix’s children’s menu features a different color scheme than the regular menu, you can easily see whether your kids access the content permitted to them or not. However, this doesn’t stop kids from moving over to your profile, so you still have to be vigilant.

iTunes and Apple TV allows parents to set rating levels for the content their children watch. By contrast, Amazon Prime features no parental controls, so the only thing to do is to logout of your account and not share the password.

All of these tools, however, do not replace having frequent conversations with your children about what they watch.

Monitor TV time by limiting the number of hours they watch per day, incorporating parental settings, talking to your child about the content they watch, and spending TV time as a family.

3. Gaming consoles and online games

According to the NPD group, 91% of American children aged two to 17 play video games. Gaming consoles have long been a focus of fear and concern for many parents. With so many games featuring violent or sexual content, it is important to be careful about the kinds of games your children play.

In addition, console games that have a multiplayer component, or games that are entirely based online, are open to abuse from other players. Many games allow players from all over the world to chat with one another, potentially exposing kids to harassment and cyberbullying. Kids may also form relationships with other players and may give away their personal information.

Games are also a great way for kids to develop a variety of skills. They help children develop problem-solving skills, learn how to commit to long-term goals, and how to work as part of a team. They can also be a great opportunity for family bonding. Luckily, most gaming consoles provide robust parental controls, so parents can monitor their children’s gameplay.

Monitor and encourage safe play infographic
Encourage your children to discuss the games they play. Make sure your child profile is set to private. Consider keeping the gaming console in a shared, social space. Study the age rating of the games. Use parental controls to set up profiles. Limit the type of people your child can speak to online.

4. Social media

While the format has changed, parents have worried about their kids’ TV shows and video games for years. Social media, on the other hand, is a new worry to add to your plate.

Social media usage is now ubiquitous amongst US teens; 71% use more than one social platform. Children nowadays also spend an enormous amount of time on social media. A survey by the non-profit group Common Sense Media showed that 8 to 12 year-olds were online six hours per day, much of it on social platforms, and 13 to 18 year-olds a whopping nine hours!

According to a recent Harvard study, even though most social media platforms require users to be 13 years of age to sign up, 68% of parents surveyed had helped younger children set up an account.

Social media can be particularly addictive for tweens and teens. It also opens the door to a variety of different issues, like cyberbullying, inappropriate sharing, and talking to strangers (more on those below).

Access to social media is also central to teens’ developing social identity. It’s the way that they connect to their friends, and it can be a healthy way to hang out. The key is to figure out some boundaries so that it remains a positive experience.

Enforce a safe environment. Do not let your kids on social media until they’re old enough. Keep the computer in a public location. Limit the amount of time spent on social media. Block location access to all apps. Adjust the privacy settings. Monitor your child’s online activity.

5. Cyberbullying

Our children’s lives have moved online. Unfortunately, their bullies have moved online too.

Cyberbullying is frequently in the news, with reports of teen suicides due to online harassment.

Cyberbullying occurs across all of the platforms we have outlined above, and it comes in many forms: spreading rumors and sending threatening messages via social media, texting, or email, pretending to be another child and posting embarrassing material under their name, forwarding private photos without consent, and generally posting online about another child with the intent to humiliate or degrade them.

Cyberbullying is particularly harmful because it is so public. In the past, if a kid was bullied on the playground, perhaps a few of his peers saw. Now, a child’s most private information can be splashed across the internet and is there permanently unless reported and taken down.

Cyberbullying can negatively affect the online reputation not only of the victim, but also of the perpetrator, and have a deep impact on that child’s future, including college admissions and employment.

It is also extremely persistent. If a child is the target of traditional bullying, his or her home is more often than not a place of refuge. Because digital platforms are constantly available, victims of cyberbullying struggle to find any relief.

It’s often very difficult to tell if your child is being bullied online. It happens online, so parents and teachers are less likely to overhear or notice it. Fewer than half of children bullied online tell their parents or another adult what they are going through, according to internet safety organization i-SAFE. In fact, according to a US government survey, 21% of children aged 12 to 18 have experienced bullying, and an estimated 16% were bullied online.

The best way to prevent cyberbullying or to stop it in its tracks is to be aware of your child’s behavior. A number of warning signs may present themselves.

A child who is bullied may shut down their social media account and open a new one. He or she may begin to avoid social situations, even if they enjoyed being social in the past. Victims (and perpetrators) of cyberbullying often hide their screen or device when other people come into their vicinity and become cagey about what they do online. They may become emotionally distressed or withdrawn.

Talk to your child about cyberbullying.

6. Privacy and information security

As parents, we are most concerned about the effect of the online world on our children’s emotional and physical wellbeing. Children are susceptible to information security threats that can cause financial harm. These are the exact same threats that adults face: malware and viruses, phishing scams, and identity theft.

The issue is children are far less experienced and are generally far more trusting than us cynical adults. To kids, sharing their personal details, like their full name or where they live, may not seem like such a big deal. They may even be tricked by a malicious third party into sharing your credit card details.

There are a number of ways that hackers and thieves can get information out of children. Free downloadable games, movies, or even ringtones that market themselves to children can place viruses onto your computer and steal your information.

Hackers posing as legitimate companies like Google send emails purporting to ask for your child’s password. Or, they may pose as one of your children’s friends.

What should you communicate to your child?

Have a discussion with your kids about the big threats online today. Make sure they know what a phishing attack and a disreputable games website looks like, so they know not to fall for these scams.

Make sure they keep all of their information private and that they never publish their full name, phone number, address, or school they attend in a public place.

Talk to your kids about passwords. Having a strong password is the first and best measure to prevent hacking and identity theft. Using a secure password generator like the one we created is great for this occasion, and trying out passwords together is a fun way of ensuring your child’s password is as strong as possible.

Tell your kids to avoid using public wifi – this is an easy way for hackers to get into their devices.

What you can do to create a safe environment:

Install a strong antivirus program on your home computer and the devices of all family members.

Think about installing a VPN on your computer. A VPN, or virtual private network, encrypts your connection and anonymizes your web browsing. This makes it far harder for hackers to access and steal your private information.

If you and your kids use a lot of different devices around the house, consider installing a VPN on your router. That way, all internet traffic that goes through the router will be protected, without having to install the VPN on every device.

Install an ad blocker so your children won’t have to face deceptive advertising that encourages them to download malicious programs onto your computer.

If your kids have smartphones, make sure that their security settings are set to maximum.

7. Viewing inappropriate content online

Because the internet is so open and public, it is also a place where kids can stumble upon content intended for adults, content which they may find upsetting, confusing or distressing. “Inappropriate content” can mean many things to many different people, from swearing to violence to sexual nature.

It’s not easy, but eventually, you will need to have a conversation with your children about what they might see online. Many children don’t go to their parents when they see something they perhaps shouldn’t have seen, for fear that their parents will be angry at them, and take away their devices or internet access.

If your child comes to you with this type of issue, the best thing to do is to respond calmly and be open to discussion. If the content under discussion is sexual, your child will likely be embarrassed already, particularly when talking to their parents about these kinds of issues. Let them know you are there for them and are ready to answer any questions without judgment.

Young people may see sexual content online for all kinds of reasons. They may have seen it by mistake, a friend might have sent it to them, or they may have sought it out themselves out of natural curiosity.

It helps a great deal to talk to your kids honestly and frankly about sex, and a discussion about online pornography is a crucial part. A lot of research has shown that pornography can have a detrimental effect on young people, giving them distorted and unhealthy notions about sex. Pornography can also lead people to think of others as objects, rather than people with thoughts and feelings. At the same time, it’s totally normal to be curious about sex and relationships. This conversation is a great opportunity to direct your kids to positive resources about sexuality.

There are also a number of steps you can take to try to prevent your kids from being exposed to content they’re not ready for, like setting up parental controls on your internet connection. Remember, though, that technical fixes can’t replace open communication with your child.

Communicate with your child:

Let your kids know that they can always come to you if something is bothering them, or if they have questions about anything they have seen online.

Let them know that it’s totally normal to be curious about sex. Direct them to positive online resources like Brook and Thinkuknow. Thinkuknow is particularly good for younger children, and it includes different, age-appropriate sites for different age groups. You may find it helpful to look through the site together and discuss some of the issues.

Steps you can take to block inappropriate content:

Set filters to block inappropriate content like pornography. Your ISP (internet service provider) should provide free parental controls, as should most gaming consoles. These are usually pretty easy to set up.

Set Google to “safe” mode so that your children won’t inadvertently see inappropriate content in search results.

Install an ad blocker to prevent viruses that might have inappropriate content.

8. Online predators

In our last section, we take a look at the darkest and scariest online threat of all: online child predators. According to the US Department of Justice, 13% of young people with internet access have been the victims of unwanted sexual advances, and one in 25 children have been solicited for offline contact.

Predators engage in a practice called “grooming”. In other words, they attempt to form a relationship with a child with the intention of latter abusing them.

The internet has made life a lot easier for child predators. Predators target their victims through any and all online mediums: social media, email, text messages, and more. By far the most common method, however, is via an online chatroom: 76% of online encounters with sexual predators begin in a chat room.

13% of kids with internet access are victims of sexual advances

Predators often create multiple online identities, posing as children to trick kids into talking to them. They discover as much as they can about the children they are targeting by researching those children through their social media profiles, and what they have posted on chatrooms.

They may contact a number of children at once but tend to concentrate their efforts on the most vulnerable. These predators aren’t satisfied with merely chatting with children online. They frequently trick or coerce their victims into online sexual activity, via webcam or by sending sexual images. They may also attempt to meet and abuse their victims in person.

It’s not always easy to tell if a child is being groomed, particularly because most keep it a secret from their parents. There are a number of warning signs: children who are being groomed by predators may become very secretive because the predator often threatens the child not to share information with their parents or friends. Children can also become sad and withdrawn, distracted, and have sudden mood swings. It is absolutely crucial to let your child know that you are there for them and that they can talk to you about anything.

What should you communicate to your child?

Have a discussion with your child about the risks of online predators. Make sure they know to be careful about who they talk to online, and not to share any personal information with strangers.

Tell your kids that they can come to you with any problem, no matter what it is.

Think about working through some educational content with your children relating to this topic, like the excellent videos at Thinkuknow.

If you think that your child is at risk, seek support from their school, a social worker, and the police.


There are lots of different technical tools available out there to help keep your kids safe online. These vary from VPNs and antivirus software to internet filters and parental controls. But none of these are really enough to help keep your child safe.

As we’ve repeated over and over in this guide, the key isn’t mastering a set of complicated technical tools. (In fact, most are very easy to set up, so don’t let a lack of technical ability hold you back). It also doesn’t mean you have to master the latest internet fad every time one pops up – believe us, you will never keep up!

The far more important, but also far more difficult task, is to have frequent, open and honest discussions with your children about their lives. Remember, internet companies, social media networks, gaming providers, and everyone else in the online space may be able to help you set content limits, but they don’t necessarily have your child’s best interests at heart.

The very best person to keep your child safe online is you. Talking about how to stay safe on the internet is an excellent conduit to build a trusting and positive relationship with your child.

Internet safety needs to be a priority for every parent and caregiver. If you have found this guide useful, consider sharing it with friends and family via Facebook and Twitter.

Feel free to share and copy this post or parts of it to your site, blog, or social networks. All we ask is that you attribute it to us. We want to keep kids safe, and your help to spread the word is important."

I wanted to share my favorite poem because it has gotten me through some really rough times and it might help someone else. It comforts me when I'm at my lowest. I had to memorize it in middle school but I still love it to this day. If it will help or reach someone who is going through a tough time, then I'm glad. I recite it to myself when I feel defeated or upset. It's a really great poem.



If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!"