Tuesday, May 14, 2013

I've Got Your Back


Today is day two of The Fourth Annual Diabetes Blog Week.  Here's the prompt:

Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?



Yesterday my blog was critical of the system of endocrinology care at Dallas Children's hospital.  At the end of the post, I mentioned that I'd found some agreement from some parents at a local support organization.  That part of the post has since been removed, because, the leader contacted me privately and asked me to remove the group's name from yesterday's post because it was "negative" and "We don't want any negativity at Type One Family Network."

I immediately, before we ended the call, respected her wishes and removed the group's name from yesterday's blog post, even though what I'd said about the group was that I'd found support there.

I found the Type One Family Network (TOFN) through a friend of a friend.  Unfortunately yesterday after our conversation, I chose to withdraw my membership from the group, because they weren't able to give me the support I thought the group was intended to give.  Apparently, I misunderstood.  The very support I was grateful for yesterday turns out to come with conditions: no complaining.

The first sign that Type One Family Network was not for me came about a week ago.  A thread on the Facebook page had generated close to 60 responses wherein parents were sharing their frustrations with various health care settings, situations and teams. There was a lot of "me too!" and, "I know just how you feel!" Sprinkled in with "Thank goodness I'm not the only one."  As well as a smattering of, "We love our provider, we've received excellent care." This is the precise function of a support group, and it was working.  Then, mysteriously, the group leader piped up and said, "I'm closing this thread. No more comments please."

Huh?

See? Humor!
I have to work at not being negative.  It's not easy for me. I'm just not one of those sunny people I so admire. I admit that, but I make a conscious effort.  I do try to find nice things to say, I look for humor,and when I run into trouble I don't collapse, I look for solutions.  But injustice, and irrational arbitrary policies at hospitals and clinics make me angry. I'm pretty sure that's normal, particularly for Mama bears with sick cubs..

Speaking of Bears, If you read other posts on this blog you will find some warm loving positive energy here too.  Just read the one about our friends raising money for Eleanor to have Jerry the Bear, and how she wants to help other kids get one too - see? all warm and fuzzy! It is my intention to make the post-mix heavy on the sweet stuff and light on the bitter, but sometimes I just gotta get the bitter off my chest. This diabetes stuff is hard.

My daughter's type one diabetes fell into my lap in March.  Finding the right support group was an early attempt at soothing the heartache.  I've joined a handful of forums and groups, but I'm still trying to find my way; navigating new waters, casting about, looking for companionship and respite.  I'm still really new to the DOC.  I need help, comfort, reassurance.

They both have Decoms. Fun.
I wouldn't be surprised if I look back at some of these posts years from now and see my own pain with fresh eyes, and recognize the naïveté, the open wound, the lashing out, the displaced anger. But I'm immersed in it now, and what I need right this minute is knowing someone's got my back.  I don't want to do this alone.  It's scary.  My mom is gone, and I miss her. I'd give my left leg if I could share all this with her.  She'd say the right things, and let me hiccup the same anguished sob into her shoulder again and again, if I needed to, until the tears finally stopped.  Whenever I think of her, it reminds me what an enormous job I have to do with my own three as, Mommy with a capital "M." So, I type it here, and in forums because there's nowhere else to put it. There's nowhere else for it to go.

I was told yesterday that Type One Family Network doesn't want to hear it though.  I suggested that because I shared on my blog that I'd found support from TOFN, it would be a way for others in need to find the group, and know that there is shelter there.  But the group leader said, "I don't want people to find TOFN because they're having problems."  She added that the group gives a standing response to anyone taking issue with a diabetes care provider: take it up with that provider themselves, call the customer service feedback number, but don't bring it here. "We don't want any negativity" She then gave me a list of alternate places where I can complain.  I carefully wrote them down so I'll be sure to do it right next time.  ;-)

So my petition is to the Type One Family Network: please remember that people need support groups precisely because they are struggling.

To my readers: Y'all know of any good support groups? Wanna join me in a new one? I've got your back!



11 comments:

  1. That's ridiculous!!! What's the point of a support group if all you can do is post about the good things? You don't need support for when you're strong and feeling good. You need it for when you have problems and are seeking solutions or just plain feeling weak. After all, there's very little about this disease that's positive. Good luck being Sally Sunshine about it. You put on a good face to people who don't know and couldn't know. A support group is for those private times when you just can't hold it together as well as to celebrate your moments of success and everything in between. I LOVE the FB group I've joined. I can see if you can join our group. The only downside is that it's a local group specific to our area so if someone does have issues with their provider, they can suggest another or tips to make it more successful. They can tell you who the best dentist in the area is and who to avoid. etc. But there's also support for general stuff as well. Dealing with schools, Disneyland, and more. If you do start your own (facebook group), I will join. You should NOT have to suffer alone with no solutions. I do think you should explore other options for your provider and find someone you feel supports you in your goals and that you feel you can be honest with about your struggles without being punished.

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    1. Thanks Michelle. I appreciate the support. Obviously most of us realize how support works, and what it's meant to do. I would like to have a local group, because I want Miss Eleanor to have some Diabuddies nearby to play with. I was pleased to have some local folks reach out to me independently who want to get our kids together. And Eleanor is going to summer camp nearby too, so she's sure to meet some girls there who can be her friends. Of course if I start a Facebook group, I'll let you know!

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  2. I am sorry that you are having trouble finding a local support group to help you through all of diabetes! I hope that the DOC will be a good standby until you can find a local group. In my area we don't have a specific group, but through twitter I found a bunch of people in the area who were looking for just that. Find email addresses through blogs & such, and see if people are available for coffee, drinks, dinner, etc.

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    1. Exactly! Coffee really is wonderful stuff, isn't it? I've already been tickled that a couple of parents have independently reached out to me. Also our local JDRF has a monthly "club" meeting. I've already been to the first one, so maybe there's another avenue I can pursue. I also belong to a small group with members scattered all over the place, and that's great for me. As I mentioned in my reply to Michelle above, what I do want to find is some playmates for Eleanor. She's specifically requested kids to play with that have diabetes! But she doesn't need a hundred, or even a dozen. She just needs one or two close friends. They're the best kind anyway. Thanks for your reply!

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  3. See what they did there? By telling you to not talk about them, you talked about them. How's that "no negativity" thing working for you now, TOFN? I like it. Don't worry... we gotcha back.

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    1. Thank you! I knew I could count on some folks to be reasonable! :-) Hugs to you!

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  4. That is just twisted... I can't even wrap my head around it! My suggestion is to visit www.childrenwithdiabetes.com or tudiabetes.org. They've been around for years and they are well-equipped to handle a variety of opinions. Both resources are highly respected and so I think you'll feel safe and welcome there. Sometimes smaller groups get a little too obesessive with how they want their group to be that they forget how other people feel.

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    1. I think you're right, I've experienced some inner turmoil with the small local home school groups I've belonged to as well. I think this is similar, but this matters a lot more because I'm so emotionally vulnerable right now. It's pretty easy for me to blow off home schooling mommies who get in a wad. Also… there's a lot more home schoolers than there are moms of T1Ds! Now there's a thought… probably a whole blog post there about being a minority in a minority. Thanks for you reply.

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  5. Wow, just wow. I wish I had words of support and encouragement to share with you. It's not that I don't have any at all to share, it's just I am so dumbfounded that a support group doesn't want negativity. "Here I am to talk about diabetes and I am so happy and I eat whatever I want and my blood sugar is always 80." That's BS. We're all human and we all encounter things we wish we hadn't. I know your journey is just beginning, but it will get better with time. I promise. xo

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    1. Thank you. I know you are right, and frankly, even though you weren't sure you could offer encouragement, just speaking up and saying anything at all was exactly what I needed. Knowing there's a listening ear. Thank you, friend.

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  6. Personally, I'm not a fan of unconditional praise, empty smiles, and forced compassion. Part of what makes this Online Community work is that we can share -- and relate to -- the good AND the bad. Pretending the occasional (or more-than-occasional, as the situation sometimes comes to be) bad times don't exist won't make them go away...

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Thanks for your comment! I'll post it as soon as I see that it's relevant to the conversation and not spam. I appreciate you reading Girl Glycosylated.