Embracing Life & the Child with the Disease

No Pity Zone

Stong, Determined and Focused Ryan

Diabetes is a disease, an autoimmune disease, a 24/7/365 autoimmune disease that is extremely high maintanance.  You all, d or not, who read my blog, know so many of the details about every bite being counted, every minute of activity being considered, stubborn highs, fighting lows, etc, etc, etc.

These things are factual.  These facts cannot and will not change for Ryan for all of his life until a cure is found.

But it does not define Ryan, who we are as parents or who we are as the Lederer5.

So with that said, we do not want your pity.

I started blogging for therapeutic reasons.  I needed a place of release.  A place to be heard.  To be understood.

Then I started meeting other bloggers and other d-moms.  I became part of a community where people just “get it” because they live it too.  And I shared and still share some of the hard times, vent problems and solicit suggestions/help.

As readership grew, it dawned on me that I could also be an educator.  Diabetes is so misunderstood.  And Type 1 Diabetics and parents (if the diabetic is still in parental care) live with a sort of diabetic stigma and judgment assuming we have done something wrong.  If we had only fed them better or made them exercise more, we wouldn’t be in this place.  And if we would start to do that now, we wouldn’t need insulin.  THAT’S SIMPLY NOT THE CASE.

But I touch on those handful of things we deal with on a daily basis, all of which could have books written on them, to lead you into why I, we, do NOT want your pity.

And understandably so, if I could place myself on the outside looking in, when people hear of Ryan being an insulin dependent diabetic, feel it right to pity.  And I also understand the confusion when it’s offensive, and they don’t understand why that four letter word puts us on the defensive so quickly when we share our plight.

Pity, in it’s rawest definition,  is “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another leading one to give relief or aid or to show mercy” (1st definition at dictionary.com).  And this is not offensive when you look at it this way.

But pity, like so many words in our rich, beautiful language, has a negative connotation.

I don’t know of anyone who wants to be pitied.

My mind goes back to the 80s and I can hear Mr. T saying with his finger-pointing, mohawk touting, gold dripping self, “I pity the fool . . . ”

But in all seriousness.  Pity has a negative shadow.  It says your situation/circumstances define you.  It points out unavoidable limitations.  It has an emotional disconnect.  It discounts the rest of your person and highlights only the negative challenge.  And often, it offers no understanding, no genuine compassion and no help.

This certainly does not only apply to diabetes, but any life challenge that someone may encounter whether other disease, sickness, financial challenge, family dysfunction, economic status, victims of any situation, etc.  No one would choose for their person to be defined or judged by the circumstances in their life that are out of your control.

One of my most fav d-mommas, my Chicago T,  recently shared her answer or response to people when they pity her and/or her daughter in dealing with diabetes.  She simply replies, “It’s our ‘something’.  Everyone has ‘something’ and ours is diabetes.”

Don’t you just LOVE that?

That keeps the pity away.  That keeps people from comparing their ‘something’ with ours (And you know what I mean here, right?!?  We should NEVER compare heartaches or life challenges.  We should NEVER think that our hurt is greater than someone else’s and minimize someone else’s pain).  That keeps it all in perspective and brings us back to that place where all things are relative.

Ryan is too young to understand pity and its negative connotations.  But let me briefly share with you about Ryan.  Diabetes does NOT define Ryan.  Ryan has diabetes and must be considered when caring for Ryan but diabetes does not HAVE Ryan.  He knows no limitations because of diabetes, not with food (yes, he can still have sugar and sweets and cupcakes and candy, but in moderation as you would do for any child and with insulin), not with activity, not with learning, not with anything.  He may have to work a little harder than “the average bear” to make sure his sugar doesn’t go too high or too low, but there are no limitations.  Prior to Ryan’s dx when he was only five, we noticed characteristics in him like determination, structured, meticulous, conscientious, strong, driven and courageous.  And diabetes has only heightened these character traits.  There is so much more to Ryan that diabetes.  He is a great reader.  He is super smart.  He has a great, sarcastic sense of humor.  He is full of energy.  He is happy.  He is a people-pleaser.  He is loving and lovable.

And why do I tell you all that (and I could go on and on and on)?  Because pity discounts all of that and only focuses on the challenge, the hard – the diabetes.

There is so much more to Ryan than diabetes.

There is so much more than diabetes to me, as his mom, too.  My life is not over.  Our family is not doomed.  Life is still good.  I may be frustrated because it’s hard.  I may be tired because I can’t figure out what’s going on with all the variables and have to check him or treat a low or fight a high all night.  I may be weary of how demanding it is or the simple truth that it does not go away or he does not grow out of it.  I may be heart-broken at times because in my mind, he’s my child, it’s so much for a seven-year old to bear. But I want you to know I do not want your pity.

Rather, I want your compassion.  I want your understanding.  I want you to be educated before you form an opinion.  Compassion and pity have the same raw definitions.  But compassion has heart.  Compassion is enveloped in emotion.  Compassion offers help when it’s appropriate.  Compassion sees the child beyond the disease.

Pity sees diabetes.  Compassion sees Ryan.


Comments on: "No Pity Zone" (9)

  1. Great post! And I love the last paragraph. Beautiful.

  2. This is a beautiful post. I love it!

  3. I absolutely hate it when a stranger (or someone we know just a little bit) learns that my daughter has diabetes and immediately says “I’m sorry” or “That’s too bad.”

    It hits me in the gut every time that they pity her. We don’t need or want their pity.

    Great post, Amy!

  4. I love this post. It’s so true! Everyone has their “something”, but it doesn’t define the person. Ryan is an awesome boy with so much enthusiasm, personality, and character! And think…this is coming from someone who has only had the privilege of hanging out with him a couple of times. I can only imagine the positive impact he has on day to day acquaintances.

  5. Empathy. I would love some empathy. Empathize with our something.

    So true!

  6. Yep, yep, yep…I hear you on so many levels here Amy. “Compassion” is where it is at. Funny though, how in the beginning of Joe’s “D”…in a way I did want people’s pity. I think it was the only way I could really feel they GOT IT. Weird, and I am embarassed to even admit it. LOVE YOU!!!!!!!!!!!!!!!!!!!

  7. Love love love! Compassion. Understanding. Support. All I want!

    Thank god I have you ladies!

  8. Nice…yes no one wants sympathy they want your understanding…liked the post…I am trying to send you e-mail and coudn’t find it…can you please send me your e-mail to diabetic365@gmail.com….i want to send you one personal e-mail…

  9. Compassion, understanding, empathy — those’ll do the trick. Pity — no thanks!
    Great post!

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