So I (or a loved one) just got diagnosed with type 1 diabetes, now what?!?

As this is a topic that comes up most often, it’s worth a re-post. A dear friend has a family member, a nine-year-old girl, who was just diagnosed two weeks ago and asked if I could speak with the family. I’m always happy to speak with parents of newly diagnosed children, but it has to be in their time. Some parents are just not ready at first and just need time to wrap their minds around this new life. I’ve been there, and the feeling of helplessness is overwhelming. When they are ready to talk, the question hanging over their heads is, “Now what?” This is the question I get asked most often, so, the simplest way to put it… there is no simple answer. 

The “now what” is different for everyone so it’s a pretty loaded question.  I try not to sugar-coat anything (no pun intended) or tell parents what they want to hear.  The truth is, your life is going to change.  Your child’s life is going to change.  But, this doesn’t have to be a bad thing (even though it seems like it right now).

As a parent, you have no doubt been all over the internet researching, learning, driving yourself mad over the volume of information there is available and trying to decipher what’s important, what’s not, what’s right, what’s wrong.  I could tell you to stop, but I won’t. I won’t simply because I am a parent myself and telling me stop wouldn’t do any good.  You are going to do it anyway.  You will continue to drive yourself insane trying to soak in this new life.  But, this is all part of the process.  It’s part of learning to live with something new and trying to arm yourself with as much knowledge as you can.  And, it’s human nature.  It’s our natural instinct to do whatever we can for our children.  Plus, are you really going to stop just because I said so?  I thought not.

If you have read some of my previous blogs, you know I am all about perspective.  I am a huge believer that your attitude will make or break you.  A bad attitude will lead to a lifetime of bad experiences, negative thoughts, and emotional meltdown.  I’ve said a thousand times, I never mean for it to sound like having a good attitude is “just that easy,” but if you can get there, your life will absolute change for the better, and that is a promise.  It’s never a good time to get diabetes, but getting it now is leaps and bounds better than any other time in history.  With insulin pumps that allow you to take insulin in different ways (extended boluses, dual-wave boluses, temp rates, etc.) and continuous glucose monitors, a long, healthy life is extremely achievable.

The first days and months of a new diagnosis are dizzying.  You feel like you need to learn a disease, inside and out, all at once.  You want to scream from the rooftops that it isn’t fair that your child has to live with this burden.  You feel like you would do anything to take it on for them.  If this is you, and I know it is, it’s okay.  It’s all part of your journey in navigating a difficult, consuming disease, and you have every right to feel whatever it is that you feel.  Another thing I am a big believer in is that nobody has the right to tell you what you should or should not feel.  God made all of us unique for a reason, so let your heart feel what it feels. It may not be what someone else’s heart feels, and that is okay.

The truth about T1D is that the learning never stops.  I still learn tricks that I’ve never heard before or tried, 30+ years later.  Yes, you need to learn the basics, but the rest will follow, a little at a time.  When I hear diabetes educators tell patients how many “treats” they can have in a given week, I want to rip my own eyeballs from my head.  It’s utter nonsense.  That may have been what was taught way back when, but to the extent that advice is outdated is mind blowing.  That kind of thing was taught when insulins worked very differently and required a strict diet on a regulated schedule.  Technology advancements, especially insulin pump features and CGM’s, make it so that no food is restricted.  Should you eat pizza and candy every day?  Absolutely not, but neither should a non-diabetic.  One thing I always tell parents is that if it is unhealthy for a diabetic, it is unhealthy for non-diabetic.  Questions like, “should you be eating that” should enthusiastically be answered, “Why yes I should, thanks for asking!”

You will get there, and so will your loved one.  Different foods work differently in every one of us, so there is no one-size-fits-all about diabetes.  It is all about learning your own body, how it reacts to stress, exercise, food, and weather.  Figuring that part out can be tough, but it is also rewarding.  I love a challenge, and I love figuring out new foods and how to properly dose for them.  It took a long, long time, but I have pizza figured out perfectly now and hold my sugar steady over the next several hours.  That was for sure a pat-myself-on-the-back triumph!

I know this is such a cliche, but diabetes is truly a one-day-at-a-time disease.  Get through today.  If you need to at first, just get through the next hour, and then the next.  Don’t get caught up trying to figure out life five years down the road, because in five years, things will be way different than you imagined anyway, so don’t waste your precious energy.

I recently had the pleasure of connecting with a sweet mom whose son was recently diagnosed.  I gave her a lot of the above advice, but I also told her that I want her to call me and let me know when the day comes that she is able to say, “Wow, I get it now.  I can’t believe how overwhelming this seemed at first.” I will be really excited when that time comes for her.

The most helpful things after a new diagnosis, in a nutshell:

  1. Let it out.  Get mad.  Scream if you want to.  Pull it together and plow ahead.  Repeat as necessary.
  2. Get involved.  Join a support group, local or online.  Write to your senators.  Become a patient advocate.
  3. Learn how to carb count and utilize online food databases.
  4. Ask your endocrinologist about a pump and CGM.  A pump is a personal preference, but for me, it’s the most freeing and allows more flexibility in eating.
  5. Don’t feel like you need to “learn diabetes” in a day.  There are many factors in this disease.  Be patient, and give it time.
  6. Embrace it.  Your loved one did nothing to cause this.  Embrace it and figure out how to move forward.
  7. If someone starts talking to you about a “diabetic diet,” walk away.  Walk away fast, and delete the term “diabetic diet” from your vocabulary as there is no. such. thing.

Knowing what I know after living with diabetes for over 30 years, I wish I could take your pain away and take on your burdens until you get to a better place.  But, the truth is, the getting there is an experience we all need to navigate on our own.  Tom Hanks said it best in A League of Their Own when he said, “The hard is what makes it good.”  You have to put in the work and you have to figure it out on your own.  When you do, oh what a feeling!

As always, I would love to connect with you if you have any questions.  Thank you for reading and for the positive feedback.  I am grateful for all of you!

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