Living With Type 1 Diabetes: I Hear You, But I’m Not You

I’ve had type 1 diabetes for nearly 14 years. I have fallen off the wagon a few times, battled diabulimia, survived numerous insulin shock comas and ketoacidosis episodes, and struggled with acceptance: I have my scars. Despite these mistakes, I’ve picked myself up countless times and have prevailed. I’ve persevered with a disease that doesn’t take vacations for even a minute, and I’ve come out on top. I’m alive and healthy, with a full life and a child of my own.

Yet when I tell part of my struggles with this disease to people who are also type 1, they are very quick to point out every flaw in my journey. They are always ready to correct me about what they deem to be my errors, even if it means they simply have not interpreted things the way I intended. Perhaps they are trying to demonstrate that they are knowledgeable in a field that few have battled through. I suspect that they are spending much of their time proving to the world that they are “normal” and “capable” and “perfect.” By the time I share my story with them, they’ve forgotten that I’m also living their struggles and can, perhaps, understand their feelings and concerns.

It seems that people are less apt to empathize than to become judgmental and aggressive toward someone who is simply trying to do the best that she can. When I share pieces of myself with others and they take those pieces and only preach to me about every obstacle I could have handled better, I wonder if they really believe that I am not aware of my mistakes. I wonder if they have listened to a word I’ve said at all, or have simply waited for their turn to speak.

My daughter turned eleven months old today. In these past months, I have done enormous amounts of research regarding treating illnesses, what kinds of foods to expose her to at what age, vaccination schedules, sleep patterns, diaper types, how to treat her cries, and toys to stimulate her creativity.  I have read articles, credited or discredited their sources, decided for myself the validity of their content, and then conferred with my husband about the choices we’re making in raising our child.  We still have a long way to go, but I really feel that I’m doing a great job with her.  She is well-loved, well-cared for, well-fed, well-rested, and extremely happy.  She is intelligent, curious, and strong.  She is the picture of a healthy and energetic baby.

Nevertheless, complete strangers have no qualms about giving me unwarranted (and sometimes invalid) advice on how to raise her.  Perhaps they are just trying to impart their hard-earned wisdom to keep me from making the mistakes that they made in raising their own children.  Part of me is glad that they want to help a complete stranger.  Another part of me is taken aback that they feel I need to hear their “words of wisdom” when my child is so obviously not wanting for anything.  Most times, I simply thank them for their thoughts and continue on with my day.

I was in labor for 21 hours, 16 of which were unmedicated, ending with an emergency cesarean section because my child didn’t have a soft spot on her head and couldn’t come down the birth canal.  I won’t say it was the most horrific pain I’ve ever been in, but it was pretty high on the scale.  When I share this birthing experience with people who ask, they are often ready to point out the steps I took that were incorrect in their eyes: If my glucose had been better controlled, my baby wouldn’t have been so large; if I hadn’t continued to take my prenatal pills into the third trimester, my baby’s skull might not have fused together; if I hadn’t used pitocin, my labor might have progressed to the point of my baby coming on her own.

They never consider that my A1C was 5.9% during pregnancy, that I took my pills to be sure my child was getting the nutrients she needed, knowing that I couldn’t count on my placenta to fully support her in the last weeks, or that I had pre-eclampsia that warranted an immediate evacuation of the baby because we were both in serious danger of dying.

When another woman shares her delivery experience with me, I don’t stand up and tell her that my experience was so much harder, more painful, or more emotionally scarring.  When she shares a piece of her life with me, I feel honored.  I don’t feel the urge to insert my thoughts on what she could have been done better or how my experience was harder. Unless she asks me for advice on how to handle a situation, I assume that she has things under control and has done her research on her own.

I am so tired of the judgment that I face in nearly every aspect of my life, as a mother, a person with diabetes, a stay-at-home-mom, a freelance writer, a wife, and even a dog owner. People have opinions, I understand, but why does everything have to come with a cross-examination, and terms to sign?  When are the battles ever going to stop?

I feel that acceptance should at least begin here, in the diabetic community.  There are so many who feel alone in this disease, outcast in life, and neglected by the medical field.  We in the diabetic community should be the first to open our arms and say “I accept you. You are welcome here.”

Instead, too often, I see people with diabetes casting stones at each other. Often, I hear them complaining that “normal people” have no qualms about preaching to us regarding food and exercise regimens. I hear that they are tired of the misunderstandings. Then, I see them preach to each other about food choices and exercise regimens: Someone is drinking too much juice; another is eating too many carbohydrates; another is testing too little; another shouldn’t be taking oral medications; another should be on the pump instead of multiple daily injections; and so on.

If we can’t accept each other, how can we expect “outsiders” to accept us?  Even though I am very well controlled and healthy, that doesn’t mean that I don’t feel less than perfect sometimes. Even though I am extremely capable, that doesn’t mean that I don’t feel run-down, afraid, lonely, and downright abused sometimes. Just because someone’s experience is different doesn’t make it any less truthful.

It’s time that we unite.  It’s time that we share our lives with each other in an effort to learn other ways to live fantastic lives despite dealing with a chronic illness.  It’s time that we put our prejudices aside and simply support each other.  Diabetes is a difficult disease that requires 24/7 management, and we cannot do it alone.  With the way that technology is advancing, we are apt to live very long lives.  I’d rather live my life in harmony, trying to keep a positive spirit, than spend it slinging muddy words with others.  All we are trying to do is to live our best lives.  Let’s begin those fantastic lives right here.

0 thoughts on “Living With Type 1 Diabetes: I Hear You, But I’m Not You

  • July 29, 2016 at 1:44 pm

    How can I get my story about living with Type 1 diabetes for 49 years in print. I feel I have alot to offer.

    • August 1, 2016 at 10:02 am

      Donna, I’v only got 45 years as type 1 (I still call it juvenile, makes me feel younger) but I’d be happy to listen. We could talk about when we boiled needles and peed on yellow tape.

      How about it, Nadia? Do you allow readers to share addresses? You could give Donna mine and it would be up to her.

  • July 29, 2016 at 3:16 pm

    Thank you so much for writing this! I totally hear and understand this. I’m sorry the frustration judgemental people have caused you to feel. We need to listen to each other more. We need to extend compassion towards people especially when they are in a similar situation than us, even if they didn’t handle it how we think they could have. We need to believe that everyone is doing the best they can. We need to appear vulnerable in order to connect.

  • July 30, 2016 at 10:24 am

    I hear you! I really respect that you see what other preach to you is actually righteous meddling. Life has issued us all those ups and downs despite those “good” instructions from others who think we are doing it wrong.

    But perfection in dealing with diabetes is not real life. Especially where in my own experience I can start with perfect BG and walk across a large hot parking lot and end up with a low BG by the time I enter a the building.

    I am on my second continuous BG monitor and I have to say the new one (Dexcom G5) has helped me anticipate highs and lows better. It is not perfection but those ups and downs are smoothed out a bit and I have a bit better life for it.

    I enjoyed your article!


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