Coming out of the pancreatic closet

Last year I was lucky to be able to attend DTreat (a retreat for young adults with type 1) at Villanova. We had a ton of different discussion sessions. But one thing really has stuck out to me and I’ve been pondering it ever since.

One person asked how you go about telling people you have diabetes. I honestly was kind of stumped. I realized that I very rarely have that thought in my head. I never think “Shoot. How will I tell this person I have diabetes?” It usually comes up in casual conversation for me. I guess it happens because I’m so comfortable with treating my diabetes in front of people. I wear my pump hanging off my pocket. It beeps obnoxiously every once in awhile. I have no problem whipping out my meter just about anywhere and everywhere. So when I meet someone new and I need to test, it kind of just comes out.

The only time I’ve ever really thought “I guess I should tell this person” is when I’m starting a new job or I’m in a situation where I think others should know for my own safety. And usually it’s just something¬†along the lines of “Hey, just FYI I’m diabetic, so if you see me munching or playing on my ‘beeper’ that’s why.”

So, it’s something I’ve become kind of curious about this topic. Is being afraid to tell people about your diabetes a sign of just not being comfortable with diabetes itself? How do you fix this problem? I felt so bad because the person at DTreat was asking for advice, and I really didn’t know how to help.

How do you come out of the pancreatic closet???? Do you feel the need to come out of the closet with your diabetes? Do you feel the need to hide it at times?

I just started reading Cheating Destiny: Living with Diabetes by James S. Hirsch and he talks about Elizabeth Evans Hughes. Elizabeth was one of Banting and Best’s first patients to receive insulin. She had prolonged her life using a starvation diet long enough to see the discovery and mass production of insulin. She survived with little diabetes complications until she passed away in 1981. Her story is frankly amazing. But what is really crazy about it to me, is that she refused to let anyone know she was diabetic. Even her own children didn’t know until they each turned 18! Hirsch points out that Elizabeth could’ve been the poster child for insulin and living well with diabetes, but she stayed in the “pancreatic closet.” Her story could’ve actually saved lives, but for whatever reason (and in the book Hirsch theorizes about why) she kept it all to herself.

I feel like a major reason I have never kept my diabetes a secret because I want people to know what life with diabetes is really like. A lot of times people have questions. And I love it when they ask! Some people apologize for asking so many questions, and I usually respond with “Please ask whatever you want! I’d rather you understand!”

I guess it’s hard for me to understand why someone would hide their diabetes, but then again I am comfortable enough with my diabetes to share it with the entire internet. Can anyone offer any insight here?


4 Responses to Coming out of the pancreatic closet

  1. AmyT says:

    Huge smile here, Colleen. One of the first posts I wrote was called “Out of the Closet, or NOT”:

    (excuse the weird formatting – but I still feel the same way)

    • cgstrauch says:

      Thanks so much for the comment Amy. I definitely enjoyed reading your post. It fascinates me to hear how other people feel about “coming out” with diabetes. Its funny that you mention that you think you were “too old” to feel self-conscious because I definitely think it was the opposite for me. I was too young! And just grew up with my parents saying “Who cares if someone looks while you take your shot?”

      I’ve actually been thinking a lot about your interview the other day with Jessica Bernstein. I was reading about her dissertation, and I realized that she described me perfectly as a diabetic diagnosed very young. I’m always interested in how the age of diagnosis affects how someone views their diabetes. I smell another post coming on this subject. ;o)

      Thanks again for posting your link for me!!

  2. Kathy says:

    Hi Colleen,
    Thanks for your comment on my site. I really enjoyed the Promise meeting. I hope to do more of this type of thing in the future. I feel that it doesn’t really fit my personality, I’m more of an introvert, but I am so passionate about the benefits of the research that hopefully that will come out in the translation.

    • cgstrauch says:

      Thanks Kathy! I think it’s so cool that you are getting involved in Promise because you are such a great example of what the research can do for us. I enjoy reading your blog to hear what an islet transplant is really like. Thanks for checking out my blog too! :o)

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