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

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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.

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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.

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JDRF does sponsor an annual conference for young adults 18-30 with T1D that might be of interest to you. Here’s the website: POSTPONED: Young Adult Conference 2020: Presented by the JDRF - Beyond Type 1 Alliance - JDRF 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

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I totally agree with you! My son is 22 years old and was diagnosed at age 2. It seems that people are more sympathetic to a young child with type 1 than young adults. But what I am finding is that you guys are falling in the cracks with financial assistance especially. We have medical insurance for our son but the copays are so much for his medical supplies. He just graduated from college and in his master’s of teaching program. He just got hired as a first year music teacher on a teacher’s salary. His monthly costs alone for durable medical supplies is 150.00 a month. Then you add on his insulin and other meds you can add another 50.00. He applied for medicaid just to try and get some supplemental help with copays. You have to be disabled by Social Security in order to get medicaid at age 22. They denied my son because he doesn’t have a missing limb or going blind. He has never wanted to not work, in fact he works harder than any of my other children. There needs to be more attention to the fact that your age group does need help. Not only financially but emotionally as well. You are the group of young adults that are starting to get your first real jobs and become independent from your parents. There should be more support for you. Thanks for sharing your thoughts with us. Much Love coming your way!

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Your three points will be true forever. Even fellow T1D have learned to deal with our battles differently and still difficulties continue.
My 3 points differ…
Education is power.
Knowledge is useless unless shared.
It is a wise man who learns from the experience of others.

If you are Internet savy, writing a blog for fellow diabetics could become profitable. Vendors of needed medical supplies like to advertise on sites that already have a crowd gathered that shares our condition. We know a lot because we have experienced a lot. There are thousands of topics a T1D must often deal with differently. To make a collection of well written brief concise articles on how those issues you have mastered were dealt with could be a positive outlet.

Finding people in the same boat may seem difficult, but there are tens of thousands of T1Ds in your age range. All the older members here may have survived the early 20s. All those youths mentioned in this forum have a good chance of living to and through the same age range causing you distress.

The Juvenile Diabetes … magazine never helped me so it was read for only a few years. As you have found a peace from it, maybe offering a well written article on just this topic (detailing what you have learned and still long for at your age) could get you published.
I truly hope you find a career you enjoy participating in so your bosses will pay you for having rewarding days. Wishes are free.

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I wish you all the best. I was diagnosed with t1 at 23. I really felt like I slipped between the cracks many assumed I was t2 because I was not a young child but I also kind of felt alone because most of the local support groups were full of young children and their parents. I was diagnosed prior to the internet age so forums like this were not around for me. I greatly sympathize with some of the issues that you are facing. I regularly hear all about how my coworkers can’t imagine living like I do. The daily trials of variable bg readings are still a handful for me to cope with multiple decades after my initial diagnosis. After much trial and error I have found certain things to be true for my health and I hold fast to those things, no matter what others around me think. I use a medtronic 670g and sensor, but I have found that sticking to an eating schedule still works best for me. If I eat to close to bedtime, I pay for it with unstable night time levels. I have since decided that I have to worry about myself and not about the party host who wants to eat at 9pm. You too will find things that make your struggle harder or easier. Never forget that it is a constant struggle and whatever you can do for yourself to ease that stress, you can and should do for your self. Never forget that you are not alone. Keep fighting the good fight.

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Forgotten by whom???

Why sit around an expert someone else to do your laundry??? Ever think of taking the initiative and fill5the hole that you perceive? From what I see, there are. many very active young folks in the diabetes community working to help make living with diabetes better for all.

A couple of things: The original TypeOneNation Forum was conceived and created by 20ish young lady who wanted to talk with other people with diabetes Many schools and universities have diabetes clubs.

There are JDRF Chapters around the country that regularly have meetings, events, and parties for youth, and for young adults

Register yourself for testing/ expe enting with new technology. I’