The “Forgotten About” Type (late teens/young adults with T1D)

Hey fellow T1D Nation fighters and JDRF advocates,

~ This post is about feeling as though individuals between with T1D between the approximate ages of 18-25 are often forgotten about and do not have the same opportunities/resources as other ages do ~

~ About Me: ~
My name is Elyse. I am a type 1 diabetic who is 20 years old and currently living in Minnesota. I was diagnosed with T1D overnight between May 16th-May 17th, 2005 when I was 5 years old.

~ Background: ~
Lately I’ve been getting asked, “managing your T1D must be easy now… you know, since you’ve had it for so long?” Depending on the day, if I am in an optimistic mood, I can see the persons reasoning for having that thought. Although, often times I correct them and tell them how I disagree with them.

  1. Just because I have had this auto immune disease for a “long” time, does not mean it takes any less of an emotional toll on me.
  2. It does not mean I have a perfectly programmed pump, know how to adjust my basal rate by the exact increments, or even have a “healthy/stable or steady” HB1AC.
  3. Everyday is a new day and will effect my (the individual with T1D’s) BG differently. The individual will never know what is to come. Insulin is NOT a cure. It is a treatment.

It’s been getting harder and harder as I get older to let go of others ignorance and lack of education in regards to T1D. I wish the JDRF offered a better resource or group internationally for people who are +18.

I was in need of comfort and support the other day and found hope in the old T1D support books I was given from the JDRF when I was diagnosed in 2005 from the hope package/care team. One specific part I remember was the T1D bear, “Rufus.” I wanted to purchase another one, since mine ripped, and it hurt to see they only allowed T1’s who are 16 and under to request a care/hope package. It feels as though they’re not validating the other older people who are diagnosed and maybe find comfort in similar items. Additionally, has anyone noticed that for the young diabetics, they offer the “Youth Ambassador Program?” For those under 18 years old.

Long story short, I feel as though I am currently stuck in the time/age group where the JDRF doesn’t validate how hard it is for people our age. I feel like most primarily focus on youth/new diagnosis’s, diabetics going to college, or diabetics and pregnancy… they leave out the entire age group of diabetics and moving out, finding jobs, applying for internships, etc. not to mention all other external and internal struggles.

Pardon my rant. I could really use feedback and others opinions.

Hi @evandersteen. I’m glad you’re on the forum. There are people here who are newly diagnosed, as well as ones such as myself who have been living with diabetes for 50+ years (and I’ve seen a few who have me beat by a decade or more).
As you know, everyone’s experience is different and unique. I’m not saying managing diabetes is easy for any of us, but some at least seem to incorporate it into their lives more easily or successfully than others do. So when people comment on how easy it must be for you to manage, don’t be too hard on them - from their eyes you may make it look that way even though it is a challenge.
Living with anything day in, day out, we have a much better understanding than those who don’t, whatever that condition may be - medical or otherwise. We throw around our own terms and alphabetic combinations (DKA, CGM, BG, A1C…) with ease and understanding. But if you know someone with cancer, Lupus, clinical depression - they are equally familiar with their own vocabulary and terminology, and might consider us ignorant of theirs. Don’t be too hard on those who aren’t aware. It’s great if people take an interest, especially if they are in our own close circle. It would be marvelous of everyone knew the symptoms of low blood sugar and how to help in an emergency. But it’s a lot to ask, so we just have to take the opportunity to provide some education. People tend to take an interest in things that affect them or those close to them, or things they’re just naturally curious about. It may sound selfish but there’s so much to learn so we just have to make our choices about what we are going to learn about.
JDRF plays it’s part in terms of providing the resources, but it’s up to people to take advantage of them, and not everyone will.
Regarding your bear, Rufus, I’m truly sorry he’s been damaged. You may be able to find a seamstress or doll repair shop that can fix him. Another option would be to check out etsy.com - it’s a website for crafters to sell their wares, and if you search for “diabetes bear” you may find one you like.
Finally, you seem very familiar with JDRF overall (probably more so than I am), but if you’re new to this forum, do a search for “friends.” You’ll find people from various age groups looking to connect and share with others who live with diabetes, and support and encourage each other.

JDRF does sponsor an annual conference for young adults 18-30 with T1D that might be of interest to you. Here’s the website: https://www.jdrf.org/blog/2020/01/22/jdrf-yac-la-2020/ I’m not very familiar with their blog, but it might be a starting point to find other resources for people in your age group.

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Thanks Deborah @deborahlink, and welcome back