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Guest Post: Someone Who Understands.

Part of what drew me to the idea of creating a diabetes blog was the search for, and the hope of finding, people who understood.  Google was a dark abyss of bad news and depressing statistics; what I needed was to connect with others who were living life, with diabetes along for the ride.  That same connection still feels necessary, now almost a decade later.  This morning, fellow PWD Heather Gabel has offered to guest post about the search for and the becoming of Someone Who Understands.

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Holidays are meant to bring family, friends, and loved ones together. It is the nature of holidays to feel warm feelings, give hugs and thanks, and to eat all the treats you can.

I would be fibbing if I said the ‘Holiday Spirit’ didn’t consume me each year. I start preparing for December 25th on November 28th. The giving and the hugging and the loving fills me with a sort of joy that I don’t find as readily accessible in other times of the year.  However, ever since diagnosis, which for me was at 11, there has always been something missing. One piece of the puzzle that until last year I could not seem to find.

Pardon this cheesy attempt to convey the overall sentiment, but to feel complete during the holidays, all I want for Christmas is … Someone Who Understands.

I want someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family. I want to talk about what it feels like to miss those moments of laughter coming from where you would have been if diabetes didn’t take those minutes away.  I want someone who has been through the “Should you be eating that?” and that saddened glare when mom sees that you have stolen one of Santa’s cookies.

Connecting with someone who understands is so powerful during the holidays, when what makes you different feels isolating and you really get the FOMO (fear of missing out) going on.

Last year I stumbled upon something that filled that gap. What was it you ask? Why, the DOC [Diabetes Online Community] of course.

This outstanding community of individuals, via Twitter, Facebook, blogs, TuDiabetes, Glu, Children with Diabetes, or other social networking site, has connected me to a SWU (Someone Who Understands). And, to even more capture the holiday spirit,  the DOC allows me to be someone else’s SWU.

The DOC is a birthplace of friendship. Year after year, you get to know your DOC friends more and more.

I was talking with Mike Lawson about this recently and he described something I hadn’t really addressed before. He said that before he started going to conferences and meet ups, it felt like he had two distinct groups of ‘friends’. His “friend-friends” being those he physically spent time with and his “online-friends” being those in the DOC. When he started going to conferences and meeting face to face with the people he knew so well online, the groups began to merge. The lines between them became fuzzy and overlapping.

As a PWD (person with diabetes), and a PWD who has now attended four diabetes conferences, I couldn’t agree with Mike Lawson more.

Meeting people you know well through online platforms feels strange and almost backwards. You know their secrets, their fears, their hopes and dreams, and then you meet them and begin small talk because you don’t know much about their home life, their job, responsibilities, their family.

Relationships develop online, but they seal in person.

As a PWD who is 23, the holiday gap is not entirely filled by the DOC, and this is why: finding a Someone Who Understands who is close to my age is incredibly difficult online.

I don’t always feel a need to talk to someone in my exact same boat, usually if you have diabetes that is sharing waters and thus close enough. But there are times when I want to connect with a PWD who is wondering what to do after college, how to land a entry level job that offers good enough insurance, how to wear a bikini with both CGM and pump sites hooked in, etc.

There are programs out there bringing together 20-somethings with diabetes. There is College Diabetes Network, Friends For Life, Students with Diabetes, Facebook groups such as Females w/ Diabetes, Diabesties, etc. There are mentor programs like Insulliance via Beta Connect and fundraising young adult groups such as JDRF YLC chapters. BUT, there still seems to be something lacking.

It is a feeling of solidarity.  Where is a core group of PWD’s going through life post college?  Where do we meet up? How do we stay in contact?  I am certain that there are groups of friends with diabetes in the 20 something range who would completely disagree with me. You interact constantly and feel supported by your peers. That is wonderful! Where do I sign up?

If this is your circumstance, I urge you to grow your group.  Find ways to connect with others who are blogging and tweeting and Facebooking. Make a blog, yourself, and invite others your age to read it.  (A great example of someone who recently started this process is Walt. He is a 20-something who has yet to meet another PWD in person. He couldn’t find the voice, so he started it.)

During this holiday season, the DOC could become greater, more powerful. We could reach out, and welcome floaters and lurkers and plan to meet or attend the same conferences. We could inspire them to begin sharing their vital voice.  It could be a merrier year in the DOC, if we collaborated and sought out a 20-something group of advocates, writers, athletes, innovators, students, shakers, and makers.

I feel certain that there is complete openness for something like this to develop within the DOC. We just have to begin moving in that direction.  (Hey veterans, any ideas of how to begin?)

If you are a 20-something and write a blog, leave your URL in a comment below and share if you are interested in forming a solidarity group. How can we better support each other?  Moving forward through life’s many stages would feel more safe if we could all experience it together.

If you are interested in reading some diabetes blog’s by 20 somethings:

Walt’s Blog
Courtney’s Blog
Heather’s Blog
Elizabeth’s Blog
Jen’s Blog

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After graduating from UC Berkeley with a degree in East Asian religion and philosophy, Heather Gabel joined the Diabetes Hands Foundation team in fall 2012. While working there, she has become greatly involved in the diabetes community, both online and off. Heather founded an organization called Beta Connect that inspires positive language practices in people with diabetes through the implementation of mentorship programs at hospitals and healthcare centers.

And please, if you’re a 20something blogger living with diabetes and you want to find, or be, that Someone Who Understands, please leave a link to your blog in the comments.  Make the search easier!

21 Comments Post a comment
  1. Hi, Kerri, Heather!
    I read today’s post. I am a 20-something with T1 diabetes (recently diagnosed in 2011 at age 20) and have only tapped into the online community for PWD in the last couple of months. I came across this blog and have found it extremely helpful, as well as comforting/affirming to read from SWU. I want to stay connected and keep up more with more PWD in the online world! Inspired by other bloggers, I JUST started my own blog and hope to get it going in growing in the weeks and months ahead. The theme of my blog is open to my life experiences, and so it is absolutely going to incorporate the part of my life that is DIABETES. I am about to take a long trip to the Dominican Republic in January, so in my blog, reader’s will see what it’s like being being a young traveler with diabetes. I will include the link here and hope that anyone interested will share in the blogging experience–they can check out my blog, share their blog, etc!
    Thanks for putting the information and opportunity out there : )
    MY BLOG SITE: tizzycan50.blogspot.com

    12/17/13; 10:16 am
  2. Tears came for me at “someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family.”

    I loved reading this whole piece. Thank you!

    Sometimes I feel like my situation is so crazy and unique, there can not *possibly* be someone who understands–but I write anyway, so I can read it later on and understand myself. But then there’s usually someone else trying to make paleo doughnuts or find the softest brand of t-shirt for a child who gets really itchy/sensitive with BG fluctuations, or who’s in an singular-feeling TrialNet study…

    There’s really someone out there for everyone. You describe it so well!

    12/17/13; 10:20 am
  3. I am very new to the blogging world…and to diabetes for that matter, DX Type 1 less than 2 years ago @ age 30. My blog is simply an online diary of my journey through pregnancy and family life with my 3 year old daughter. Enjoy reading if interested! I am more than open to finding others out there in similar shoes! Love SUM!

    12/17/13; 11:17 am
  4. Katie #

    Hi! I dont blog about diabetes. I just read everybody’s sites and just love feeling like SOMEBODY understands the little diabetes things. Whether its a joke about finding used strips in my sock drawer or a more emotional subject like dating and when to talk about diabetes. I struggle and I feel empowered all throughtout the day. I would love to get involved more with the DOC, but I don’t necessarily want to blog. Hope everyone has a good day! :)

    12/17/13; 11:42 am
  5. Beautiful and I just might be a wee bit teary (or are there cats in my office?). Many of those feelings still hit home, even beyond 20. On vacation at 40 yrs old, my bikini bottom went flying when a wave smacked me. My pump actually kept my bottoms attached (well at my knees). I like to think of it as a pump perk, like a lasso for bikini bottoms!

    Happy holidays and well said! xo

    12/17/13; 11:53 am
  6. I find that in our 20s, we’re pretty much all over the place (some in college, some in established careers, some single, some dating, some married, some living with parents, some being parents) that matching up people who really get how diabetes fits into those situations, who are our age can be tough. Regardless of how our incredibly unique situations differ, I know that someone out there understands… at least enough. We just have to find each other! I have made a point to at least visit the people who you have listed in this post.

    I blog about more than just diabetes and love it when another PWD can connect with my thoughts on completely nondiabetes topics! (my blog: http://probablyrachel.com)

    12/17/13; 11:59 am
  7. Your words hit home!! I was DX’d at age 17 right as I was going off to college. It was so lonely. Personally, if I’m feeling brave enough to rock a bikini, it means that I really don’t care if my infusion site stuff is showing.

    I write a blog about athletics and T1. It is found at http://www.lindsayonthego.com

    12/17/13; 12:31 pm
  8. I’m new to the DOC and I just recently started my own blog. I have yet to meet a T1D in my age group where I live (Utah County, Utah). My blog is fpwt1d@blogspot.com. I would love to hear from any and all.

    12/17/13; 2:02 pm
  9. Kristine V #

    Reading this post made me very emotional as I was actually at my annual diabetes docters’ appointment today talking about how nice it would be to connect w someone on my age (20-something). Im Norwegian and there’s not too many places to reach out for someone who will understand your everyday struggles.. So I would l.o.v.e to join a DOC for us 20-somethings and find a SWU. It would definately be the best xmas present ever :) This year I finished my masters in Petroleum and Geoscience and I’ve just started working in an Oil company where my job situation is sitting 8hrs in front of a computer and w a higher degree of stress level. I wish someone could tell me that my BG will stabalize soon or just give some advice how to cope w such a huge change in life- from being a student and managing your own time to work 8hrs shifts every day. It’s all a matter of adjusting to a new situation, but its hard- really hard.
    Anyways- if anybody would like to have a chat you can PM me on FB since I dont have a blog (..yet?)
    Thanks for sharing this post <3
    Kristine Vindenes
    (@kristijne on Instagram)

    12/17/13; 5:16 pm
  10. I was really blessed in that I found the DOC very shortly after diagnosis when I was 14. I wasn’t always an active part, but I enjoyed just reading and knowing that there were other people out there, doing what I was doing.

    I write a blog, but not just about diabetes. I have PCOS and Hashi’s, and also have logophile-related posts. I try to write about life. It’s just that diabetes is in it.

    My url is peaceandperspicacity.blogspot.com

    12/17/13; 6:52 pm
  11. Hi! I’m 23 as well, I have T2 but I’m also insulin dependent so I share many of the same challenges. I was diagnosed at 18, and was REALLY alone, haha! You don’t meet many 18 year old T2s around. :)
    I think it’s wonderful to connect with other PWDs who are navigating post-college adulthood and the ups and downs that come with that. My boyfriend of 4 years is 24 and has T1. Sometimes I think it would be nice if we knew some other PWDs in our age group than just each other!

    Anyway, I’m always happy to connect with anyone looking for someone to talk to <3

    Rc

    12/17/13; 6:55 pm
  12. I dont know if I count, because I turn 29 tomorrow, but I think I still count as a 20-something. My blog is Diaturgy and I’d love to be an understanding voice and ear.

    12/17/13; 8:17 pm
  13. Heather, great post! I’m a big believer in finding other commonalities between us PWDs. We all have this common thread that brings us together but we’re quite a bit more than this one condition. I’m not always sure age is the one deciding factor but I think you’re closer to finding a way to find SWUs who really get you.

    I also agree that as a 20-something, I’m ALL over the place. Sometimes, you’ll see me all over the interwebs and sometimes, I’ll be under a real-world rock. I’ve been nervous about the search for “real” work but as a 25 year old with T1 for 16 years and being in graduate school, I’ve realized that my job path will be the tough one of trying to become a professor. I’m working on that losing weight thing with the decline of my college metabolism and being healthy despite eating on the go every day. You can find my occasional blog on a whole lot of random diabetes tidbits at climbingdiabetes.blogspot.com but I’m much more active in the twittersphere @somebody_exotic

    12/17/13; 9:19 pm
  14. What a wonderful idea! I think that since the 20s are so varied, it’s even harder to find people who are in similar situations. I’m on the late side of my 20s, but hopefully my blog can help you find what you’re looking for!

    http://inDpendence.com

    12/17/13; 9:31 pm
  15. I am sadly out of the 20-something range now, but I wonder if Jess’ list of people diagnosed as adults might help. Some of them are going to be out of the range too, but at least we know they are all adults :)

    http://www.meanddblog.com/p/diagnosed-as-adults.html

    12/17/13; 10:32 pm
  16. I think you hit it right on with this. I was diagnosed as a T2 in July 2011 and re-diagnosed as T1 January 2013 at the age of 27. It has been a huge struggle for me to feel so alone and isolated. I have attended a few JDRF sponsored events in the area but mostly find parents with T1D children. The DOC has been huge for me in terms of knowing there are others out there. I started blogging earlier this year but it has been pretty sporadic. You can find me at humanpincushionexperiment.blogspot.com. Because aren’t we all really our own science experiment/pincushion?

    12/18/13; 1:32 am
  17. Hey Heather, great post! I’d love to be apart of a 20-something community. As someone else commented, 20′s are hard because everyone is in a different place in their lives. I’m 24 and married. When I attended FFL in summer I felt like I was in between the groups since I was too “old” for the 18-22 group, but too young for the adult group. Anyway, as we discovered, we never met and yet we both attended FFL. So, I definitely think a group that encompasses everyone in their 20s is a great idea. Let me know how I can help in anyway!
    My blog is long overdue for an update but you can find it at http://www.type1at18.com.

    12/19/13; 7:58 am
  18. im 20 :) i have the same problem too… all the sites im on are either parents of children with t1 or theyre much older than me…

    12/19/13; 9:11 am
  19. I’d love to connect with other 20 somethings T1Ds! I’m smack in the middle of my 20s, living in NZ and have recently started a pump. My blog is here: http://lifewithinjections.blogspot.co.nz/

    Will be checking everyone elses out! :)

    12/19/13; 9:55 pm
  20. elisabethrose #

    Thank you for your post! I’m 22 and new to Type 1 (just under 5 months). As a twenty-something and a college athlete I have definitely struggled to find Someone Who Understands, especially in person. I would say for anyone still on a college campus there are ways to find each other! I saw a girl wearing a pump in the weight room and just went up to her and introduced myself. Maybe that’s violating some sort of diabetes etiquette but I think we’re also eager to connect! Keep looking and maybe some of these bloggers could band together and form a website or an online conference of some sort? Anyway, thanks for sharing and know that we’re out there looking for you too!

    12/23/13; 12:35 am

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