When Joey was diagnosed with T1D, a support group website was recommended to us. It was a good support tool, although it wasn’t very user friendly. A couple years later I found private groups on facebook, that were a better fit for me. I like that they have simple rules and regulations, that basically state that you must have a child with T1D to be a participant, the groups are “closed,” the conversations should be about type 1 diabetes, please be respectful of others opinions.
People share their experiences about sleepless nights, the highs, the lows, the joys, the challenges. It’s really great to have a place to go where everyone understands exactly what we deal with everyday. Sometimes when I’m up checking Joey’s blood sugar at 2:00 AM, I’ll go on FB and there is another mom looking for a familiar “friend.”
Some of these groups have thousands of members, if that is to overwhelming, you can easily find a smaller more intimate group. Then there are the more specific groups, for instance, one group that I am member of is for Omnipod Insulin Pump users. It’s actually where I found out about the Abbott Test Strip recall.
Being a member in any of these groups doesn’t guarantee that everyone will AGREE!
One of the “rules” is that you should respect each other’s views and opinions, well, I’ve seen people attack someone because of something that they felt strongly about! It turns personal on occasion. It’s a new world out there with social media, you have immediate access, 24/7, to talking with others about your life, and it’s amazing what total stranger’s are willing to share. What is it that makes us so willing to open up about the most personal aspects of our lives? I think that we want to be accepted, and having others in the same shoes as you, makes you feel better about the situation.
The topics are all over the board in these groups. You will have those that just want to vent about their Mother in-laws that will never understand this disease, to debates, like this one that recently was a bone of contention: the question was posed to parents: “Do you allow your child with T1D to wear flip-flops. It’s unusual to have a question get as heated as this one did. And it only takes one person to start a chain reaction. Here is the situation: A woman was adamant about the dangers of all open-toe shoes with T1D, she mentioned that “Not only am I a health care professional but my brother is also a published author and Dr. on diabetics studies.” She did give her brother’s name, but no-one could find him on Google, (a lot of members looked!) This woman was being attacked, because some felt she wasn’t being honest about her brother, therefore was being way over the top about the topic. This post, which basically started off with a mom asking if others let their kids were flip flops in the summer, turned into a post that had well over 150 responses. Some only weighed in to come to the woman’s defense, stating that this is a group forum to provide support, not a mud slinging contest.
Some people don’t remember that Rule #1 states to be RESPECTFUL OF EACH OTHER’S OPINIONS or you will be banned from the group!!
Here is a personal situation that I found myself in, which prompted this post. I was in a group where most of the 200+ members live in my State. In fact, I know a lot of the members in person, including the administrator, which is uncommon in the world of cyber support groups. I enjoyed the group because it felt familiar. A lot of us within the group also knew and respected a woman in our community that lost her son to T1D complications. Because his passing happened soon after Joey’s diagnosis, I felt a strong connection to this family, even though I had never met them. I had read a lot of stories about the family because they did so much advocacy work for type 1 diabetes, both mother and son were important advocates in the diabetes community.
Anyway, recently there was an article written by the family, an update really of what life is like 4 years after losing their precious son. I was inspired by the article and shared it in the small, intimate group. What happened next would shake me to my core, I could never fathom someone being offended by that post. How could anyone find an inspiring story of a family’s survival after losing a child, offensive? Here is the ONE response that caught me off guard: I am paraphrasing, because I can’t remember the exact words, but you will get the gist of it: “I purposely stayed off this site for a long time because of posts like this one. Some people look for the drama of this disease, and wait for it!” Now, I was taken aback, because again the entry that I posted was very uplifting. I understand that having type 1 diabetes isn’t a death sentence, but the truth is some kids and adults do die from this disease., that is just the truth!! Having a parent tell what their journey has been like since their child’s death is a gift from the parent, in my opinion. So when I read the words coming from the post, I didn’t have a nice reply, so I went by the mantra that if I don’t have anything nice to say, keep quiet. I am not in the business of upsetting anyone, even though I was feeling very upset.
What happened next is what really threw me for a loop. I was asked by the administrator of the private group to be “sensitive” of the topics that I post. Sensitive: “aware of and responsive to the feelings of others.” In my head I just kept saying, “how does posting a story from a mom who lost her child, who is still doing great things in the T1D community, being insensitive to anyone’s feelings?” In the same sentence I was told that the admin added 4-5 newly diagnosed families to the group and we don’t want to scare them. SCARE THEM? Really? I am dumbfounded and very confused. So, in my normal fashion, I left the group quietly. I can’t be a part of any group that won’t post the truth, and death with type 1 diabetes occurs, at onset, during sleep, during illness, during the day and the night. Turning your emotions off to the truth is not going to help you cope with this disease.
Knowledge is POWER! Learn from others’ situations!
So, beware, that not all groups are created equal. You can choose to be in a group and as long as you pretend everything is perfect in the T1D world, then you will be happy there. If not, just leave it, there are at least 1000 more to choose from.