JDRF isn’t for me

October 21st, 2010 by Amy Gonsalves Leave a reply »

On my facebook pages, an ad for the JDRF comes up all the time.  Seeing the ad makes me want to smack it.

Type 1 diabetes is a chronic, debilitating disease affecting every organ system that can strike suddenly. Are you T1D Aware?


Well, yes, I would say that I am T1D aware.  And given my experience, type one did not strike suddenly—it made me pretty darn sick for a long time before I was diagnosed.  (I see my school picture from fifth grade, taken in September, and I don’t look like myself in any of the other years.  I wasn’t diagnosed until March.  That isn’t sudden.)

Chronic, yes.  Unending, yes.  It’s my life.

Debilitating?  DEBILITATING?!  (I’ll get back to this one after I count to 10 and take some deep breaths.)

Affecting every organ system?  Yeah, can’t help that.  Every part of my body is connected to every other part.  I’ve got a major flaw since I have no beta cells to monitor the glucose in my body.

So this is one of the reasons I’m not a big supporter of the JDRF.  For one, I think the need to find a cure is too easy for people to focus on rather than learning to deal with their disease, or their child’s disease.  (How happy with yourself and at peace can you really truly be if you are always asking for a cure to take away your diabetes?  What are you teaching your child when you walk for a cure?  Most likely, they don’t need a cure as much as they need your support and acceptance of their disease RIGHT NOW.)

This other reason comes back to the “debilitating” portrayal of type one diabetes.  Seriously; a foundation built upon the notion of supporting people living with type one diabetes is the one out there using the term “debilitating” and all the connotations of weakness or “less than” that goes with it simply misses the mark entirely for me.

I don’t need a cure.  I don’t need to be associated with an organization that refers to my diabetes as something that debilitates me.  I don’t think my diabetes de-anythings me!  I understand they are trying to play up a sympathy card with these dramatic words and dramatic imagery, but it offends me.

JDRF, take a good look at the type ones around living and loving and learning and really embracing their lives.  Take a good look at ME. 

I guess I really should say: enjoy the taste of my dust.

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  1. Kaileen says:

    I have my own feelings about JDRF, and they’re not great. I understand that they’re all “working for a cure,” but for almost my entire family’s sake, we need help managing and living with diabetes.

    I am very fortunate to be in Mississippi, because we have a wonderful group called the Diabetes Foundation of Mississippi. They are great on educating and helping people understand diabetes, and they provide help and information to people who need it.

    When our daughter was first diagnosed with T1, JDRF or ADA did not give me the time of day. JDRF said they would have someone call me back, and no one ever did. The DFM has been there with and for us from day 1. They have been an incredible source of support for our entire family.

    Diabetes can be lived with. Sometimes we just need to know how.

  2. Great post and fantastic point. Thanks for bringing this to light.

  3. I am glad you and your family has the DFM, Kaileen. I see the need for support much more critical than a need for a cure… that’s why I started Diabetes Outside. If you ever want to talk on the phone or schedule a monthly or weekly appointment let me know. We’re in this together!

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