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How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

17 Comments Post a comment
  1. Sarah Bauer #

    I love that line “I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others” because that is SO it. We are only a year into this journey with our daughter; some days I hardly notice that our cupboards are full of medical supplies I had hardly even heard of 14 months ago and other days, I am practically crushed by it. I need (and am so thankful for) friends that can bounce between those two emotional poles with me.

    01/23/14; 1:16 pm
  2. Thank you Kerri for your perspective on this subject. You are in a position more than most others to understand the need to reach out. When I was going through chemotherapy I was expected, even told to be cheerful and positive about the experience. It didn’t matter that I was gravelyl ill, it was my job to keep others comfortable. So I went to classes to teach me how to make up without eyebrows or eyelashes and tie scarves so people would notice the nice scarf and not the bald head underneath. I sometimes equate it to a diabetic who desperately tries to hide the infusion sites with baggy clothing. Or slips off into the bathroom stall to check blood sugars. We aren’t allowed to look sick. That makes people uncomfortable.

    In the same rite, There are some people who become militant because I choose to use a low carb diet to help with glucose control. As a type 2 I hear, “just one cookie won’t kill you” more than it should ever be said.

    We aren’t allowed to be sick in public, and we must go hide somewhere to die. Death makes people uncomfortable. So we are supposed to tie breast cancer up in a pink ribbon so that all people ever see are sassy women wearing pink boas and singing “I will survive.” The sad truth is that 1/3 of those of us diagnosed with breast cancer won’t survive. We go on to stage 4 and eventually die with or because of the disease.

    People need to know the truth about Diabetes; and about cancer; and about a world full of disabling diseases that get hid under the guise of a courageous smile. No one should be shushing her if she wants to talk about her disease. No one should shush you.

    There is nothing pretty about DKA, or diabetics who don’t have the resourses to care for themselves. There is nothing pretty about waking up to a low of 32. Likewise there is nothing pretty, at all about breast cancer. It isn’t sassy, or funny, so just let us tell the truth.

    01/23/14; 2:47 pm
    • SO very well said, Lisa.

      01/24/14; 10:06 am
    • Lisa – rather than add my two cents to this wonderful blog Kerri has written, I’ll just say thank you for all you’ve said, too.

      01/24/14; 11:44 am
    • KarenW #

      Oh, my, Lisa…I could hug you. I am reading the comments because I LOVE what Kerri wrote and wanted to comment and see what others were commenting as well. I had breast cancer (3 1/2 years ago) and I have a daughter with type 1 diabetes, diagnosed 2 years ago. My comment to Kerri is “I want it REAL and love that you give that to us.” My comment to you , Lisa, is I didn’t know how to express a lot of what you said about breast cancer..and you did it. I went to that make-up class…sometimes when girls (ladies) at work are talking about breasts and I think “I don’t have any anymore”…or have some sort of flippant, hopefully humorous comment that includes the fact that I don’t have breasts anymore…..I don’t share because I think that will make them uncomfortable. SO…yeah…I guess when a person has some sort of medical something that makes them different, it makes others uncomfortable probably mostly because they don’t know what to do with it…don’t know what to say or do or offer or how to respond if the subject comes up.

      01/26/14; 4:40 am
  3. Tim Steinert #

    Though we all may share a disease, we don’t all share the same upbringing, years struggling with it and unique problems we face. “YDMV” (Your diabetes may vary) is very true. When I get together with my Type 1 group, we’re all eager to share and learn from one another. But we all know that whatever works for one may not work for another and that we need to experiment to find what works for US. That’s why I find it hard to judge fellow Type 1 diabetics on anything they’re doing. This disease is a royal pain in the behind and I know that the best thing I can do (and what I want from others) is to be willing to listen and empathize. And THEN, if they ask for advice, let them know my experience.

    Because we all know of our uniqueness, I think we, as a group, are far less likely to be dogmatic in our approach. We get enough of that “stuff” from people who no nothing about diabetes and are just trying to be “helpful” (and fail miserably). Do what works for you.

    01/23/14; 2:49 pm
  4. There are lots of reasons why people want to hear someone’s story, or turn away from it. It’s an individual decision.

    That said: There is not one good reason for not telling your story. Like you mention above, people need to know they’re not alone. Patients (like me) sometimes need the catharsis that comes with pouring out your thoughts online.

    As grateful as I am for the people I’ve met and relationships I’m building through this medium, I would be absolutely crushed if I couldn’t write any longer, or couldn’t write what I wanted. I’ve been silenced over one thing or another all of my adult life. I will not go away quietly, even if no one is watching.

    01/23/14; 3:07 pm
  5. JennieP #

    Thank you for sharing! Having lived with Type 1 for almost 30 years it really is a daily struggle and the online community has definitely helped me. Please keep on sharing the good and the bad. It makes me feel normal and not alone.

    01/23/14; 4:50 pm
  6. Thank you for writing this, and all you share about your experiences with diabetes. I have type 1 also, and I’ve not written much about that, but love having in-person support groups to learn from and connect with.

    When my 22 year old daughter was dealing with lymphoma, and then died from it, I started blogging as a way to share our experiences – ranging from incredibly sad to beautiful and extraordinary. I believe that when we share our experience it helps others going through something similar, or better able to support a friend in a similar experience.

    It can also be inspiring and uplifting, Our connection with others is what makes life so rich and filled with a shared sense of humanity. Thank you Kerri, for helping to connect us all!

    01/23/14; 7:16 pm
  7. I think things should be told just as they are.
    Yet, I must confess that when I was on dialysis I often spared the horrible details because I thought people wouldn’t want to read about them. I wanted everyone to think that I was courageous and upbeat.
    Lisa Adams is an incredible writer and her experiences are not for the faint of heart. But she serves as a quintessential example of the strength of the human spirit – something that those of us living with chronic conditions can all benefit from.

    01/24/14; 10:12 am
  8. Jill Evans #

    My heart goes out Morgan Gleason and I wish her the very best in beating her autoimmune illness, juvenile dermatomyositis (JDM). My 16 year-old Type 1 daughter (diagnosed at age 9) developed this rare autoimmune illness 3 years ago. We just celebrated three years of remission from this very frightening illness. Like Morgan, we also experienced trouble with diagnosis because this disease is rare. I hope Kerry will take this opportunity to shed light on JDM and raise awareness. I realize there are an overwhelming number of autoimmune diseases, but I think it is important for Type 1′s to be aware that they are at an increased risk for developing multiple autoimmune diseases. I could never have anticipated the gratitude I felt with her remission and was so relieved to have her only bare the burden of diabetes. Maybe some day there will be a treatment that could allow Type 1 diabetics to experience remission or my ultimate hope and dream of a lasting cure.

    01/24/14; 12:00 pm
  9. I just don’t understand how it is anyone else’s right to say how one woman copes with her illness. I guess by posting your experiences on the internet you open yourself up to critics, but it still seems like none of their business.

    01/25/14; 5:03 pm

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