I understand the all-too-familiar feeling that this is a giant ball you have to drag with you for the rest of your life...
and as a mother to a Type 1 Diabetic, I get it.
Finding out that your son or daughter has Type 1 Diabetes (TD1) feels like a life sentence. You will do anything in the world to take this away for them. Who can I talk to? Would do I need to make a barter with? There is nothing I wouldn't do to make this better.
And the guilt. Oh my God, the guilt.
I could have been the one that passed this one to my child. Or maybe it could have been their Father. But, do you really want to pass blame back and forth?
TD1 is a disease that will be with your child for the rest of his or her life. They have to suffer with the daily finger pricks to check blood sugar levels, but you have to count carbs so that you know how much to bolus. You have to make sure that the people around you understand how to use the Glucagon if there is an emergency. You have to know what to do for lows. And you have to know what to do for Highs.
There is so much pressure on you.
The life of a parent with a Type 1 child is exhausting, frustrating and lonely.
If you ask for a break, that could be the moment when they need you the most, and what if you weren't there?
Having someone to talk to that really gets it is important. Facebook groups and JDRF meet-up groups are nice because you get to talk with other parents who are going through it too.
Having a therapist to talk to about the deep feelings that you can't share with anyone else is special. You get the support from someone who really understands the struggles you have and doesn't think that your child got TD1 because of what they ate or because they are lazy or overweight (aren't you so sick of hearing that?).
Type 1 vs. Type 2
There are so many frustrating things about Type 1 Diabetes (TD1), first and foremost being the fact that Type 1 and Type 2 often get lumped together. Type 1 Diabetes (TD1) is so different from Type 2.
How many people have asked you, "should you be eating that?" You are told that you "shouldn't have Diabetes" because you exercise or are skinny.
In our family, TD1 is not referred to as a Disease. We call it an inconvenience, because that's what it is.
People are so uneducated when it comes to Diabetes. They honestly believe that you get it because you are eating too much junk food, don't exercise, and are lazy.
Most people have no idea how exhausting this inconvenience is on a daily (and even hourly) basis. Watching the highs and lows to make sure your A1C levels are low, trying not to go into Ketoacidosis (DKA), and ensuring that you don't go so low that a glucagon has to be used, followed by a call to 911.
There is so much that you have to worry about.
"Did I grab my pens? Does my pod/pump need to be changed? What if it stops working (which we all know they do)?
You are 100% tied to this inconvenience.
To The Caregivers
As a parent, family member, or caregiver of someone with TD1, you have a special job. You help your loved one, day in and day out, to deal with this inconvenience.
Anyone who cares for someone with TD1 will tell you how challenging it can be. You ride out the emotional roller coaster right along side of them. You worry constantly. You pay the high medical costs. You are learning to give insulin, sometimes to a screaming child or a teenager who is just so sick of this. Sometimes you have to worry about a family member who is unable to care for it themselves.
Waiting for a Cure
TD1 not just a chronic disease, and it's not like Type 2 Diabetes. It's a lifetime "inconvenience" that may mean life or death for you or a loved one.
My experience with TD1 is a personal one. My daughter was diagnosed in December of 2014, and I've seen firsthand how challenging it can be, both for the person with TD1 as well as their caregivers. The details of the disease can cost you financially, mentally and physically.
People with TD1 often struggle with depression and burnout, but they suffer in silence, believing that no one truly understands what it's like for them.
I get it. I am fighting this fight with you, and I am waiting for a cure or this artificial pancreas just like you are.
Being a Type 1 or a caregiver to a Type 1 can often feel lonely.
If all of this sounds familiar, then I encourage you to schedule an appointment using the link below. It's time for you to take that first step so that you can get the help that you deserve from someone who truly understands how TD1 doesn't just affect some things: It affects everything.