I was gently asked by a good friend 'if the infusion site change hurt?'.
It was not an offensive question, but more of a hopeful one, as I could tell that the answer she wanted was for me to say, "No.".
But that isn't the case.
Infusion site changes, continuous glucose monitor (CGMS) insertions, finger sticks, needle and syringe injections, are each inserted with a sharp, stainless steel needle through a top layer of soft skin tissue. Pain levels vary depending on the amount of nerves, scarring, fat and even the degree to which blood sugar is in-range during the procedure. Higher blood sugars are often prone to a higher degree of pain, which is also a big indicator for the need to change an infusion or CGM site. Certain areas such as pads of fingertips or muscle filled arms and legs, tend to cause more pain as well.
There is often more pain when a child is already feeling down, sick or frustrated. All parents will understand the phenomenon of taking kids to the pediatrician and explaining ahead of time that there will be a shot given at the end of the appointment. Some children anticipate the future pain and work into a frenzy of anxiety, making the procedure even more painful. I equate that type of hyper-sensitivity to being at the dentist. No matter how hard I try, I still fixate on the teeniest moments of pain and find myself reacting intensely. I can stub my toe, have it hurt like heck and manage that moment better than the injections given in the dentist chair.
Pain management is difficult to explain to a child. When our youngest was three, her entire world turned upside down and suddenly, she was being poked by people she loved at every turn. From IV lines for her severe dehyrdation to hourly finger sticks and multiple daily insulin injections, needles were coming at her from every direction. It was not any easier for our oldest daughter at age 8 to suddenly have the same series of injections. Suddenly she flipped from supporter of her sister to needing support from her sister. Our oldest may have been better able to communicate her pain and sadness, but it hurt every bit as much as it did for her crying and confused baby sister.
Pain tends to be worse at night, before bed, when a child is already worn out from a long day of managing their disease and asked to have one more poke. Conversely, first thing in the morning can be just as hard as a child has to take a poke before he/she can eat or before they head to school, with the expectation that they will be able to get over it.
Pain never quite fully subsides, even with a chronic disease that many believe we should be 'used to it'. Within the medical community, where many are desensitized of needle pokes, our family has listened to techs, nurses and even the odd pediatric endocrinologist make a comment that a flu shot or a blood draw should be 'no big deal'.
Other parents have used my family as a guide for dealing with their own set of pokes and resulting pain. Without wanting, we have become a poster-family for getting through annual pediatric shots. This is hard to hear as I carefully explain to other parents that no matter how brave a child may seem, a poke is still a poke and has the right to compassion.
Let me emphasize the fact that pain is real. Pain is not imagined or exaggerated. Pain takes many forms from depression to anger caused from managing a chronic, life-threatening condition such as Type 1 Diabetes.
The awareness of that thought is important as it may bring about a greater feeling of compassion or sympathy from people that are not living with chronic conditions, for all children (and adults) that do.
While we have no choice but to live with the pain, it is nice to have some kind people acknowledging the need for a kiss or a hug to make it better. This should not be confused with pity. Even a simple smile would provide greater support to a person living with a chronic illness than a poorly spoken 'should be used to it' comment.
The question that started our conversation was helpful.
Today, I now know that one more person is going to offer a little more kindness and compassion to all of the people that live with Type 1 Diabetes.
Feel free to share to your community as well. Together, we can make a difference.