Just Need Someone to Talk To


(Megan) #1

Hi, I just joined because I just need to talk to someone who understands. I’m 18 years old and was diagnosed in September 2017 and I’m just-ugh…
I understand and have accepted that I’m a T1D-I accepted it the moment they told me actually, so that’s not what I need help with. But the anxiety is just killing me. The fear that I won’t find a good insurance company once I’m too old to be on my parents plan, the fear that I’m troubling others whenever I have sugar problems, the fear that people will see me differently if they learn that I’m T1D. My anxiety has always been bad, it’s only gotten worse since I was diagnosed. Please, does anyone know how to deal with this? The stress and anxiety-I’ve no one else to go to. My family has their own personal problems to deal with, I don’t want to burden them with mine any more than I’ve already have.


(wadawabbit) #2

Hi Megan. I’ve been Type 1 for 55 years now. You probably would prefer to chat with someone a little (more likely a lot :blush:) closer to your own age but I thought I’d write back; but there are young adults on this forum so hopefully you will be hearing from some of them soon.
I obviously went through both high school and college with diabetes, as well as working during the summer when I was in school, and permanent job afterwards. I find that people tend to take their cues from you. Some people wear their diabetes like a burden, which burdens those around them as well. I’m not saying you should hide it from your friends, but if they see you managing your diabetes rather than it managing you; if they see that it is one of many pieces of what makes you, “you” as opposed to THAT BIG THING, you’ll probably find them more accepting, caring, curious and willing to learn and help. I would say, be sure to let your roommate and a trusted circle of friends or coworkers know, as well of course as the nurse at your school or workplace. Describe what to look for that might signal an issue, and what to do to help you if you need it. Hopefully you won’t have any issues you can’t handle on your own; but if you do, having knowledgeable people around can save a trip to the ER (a nurse once told me she knew of a guy who was in the ER a few times a month(!) with BG emergencies - in addition to tightening his control it sounded like he needed to let people around him know what to do).
I’m not sure what to tell you at this point about insurance - a lot depends on what the current administration decides to do with the Affordable Care Act. I always had medical insurance through my employer while I was working (I left the workforce to take care of my mom for a while before she passed a couple of years ago and am now job hunting again). The ACA let me keep good private insurance, but you do need to shop around for policies and see if you qualify for a subsidy. Hopefully that will continue.
I’m sorry to hear about your anxiety. You’ve probably been told this before but if you’re not already getting counseling, please look into it. Hopefully you can find someone to help with your general anxiety as well as the anxiety caused by your diagnosis - lots of people need some help learning to deal with this new part of their life. I’m sure your medical team has many different types of resources for you to use, and some insurance plans have nurse advice lines that may be able to give you some referrals if they don’t handle the mental health aspect themselves.
I don’t know about high school (if that’s where you are) but some colleges have groups for diabetic students, or you may be able to find a support group in your area. And as I said before, there are young people on this site who have reached out to find friends, so hopefully they will be able to connect with you.
One final thing - there are diabetic actors, musicians, parents, athletes, teachers, doctors, and I’ve even seen one or two diabetic American Ninja Warrior contestants! They had the announcer inform the audience that the device they were proudly wearing on their your arm was a CGM, and the camera showed their friend or spouse who they said was holding their insulin pump in case they fell in the water or hit the wall (warped or other - ouch!). Hopefully you can be an ambassador for diabetes by your lifestyle, even if you’re not a Ninja.
Wishing you all the best. Take care.


(Dennis J. Dacey, PwD) #3

Hi Megan @ArtisticMegan, a Warm Welcome to TypeOne Nation!
Like @wadawabbit I’m somewhat older than you but I will always be open to listening to your ideas and concerns - I read all posts on this site. I was diagnosed close to your age, on my 16th birthday in 1957 and I keep well informed on diabetes management and I have experienced many ups and downs along the way.
I very well understand your the anxieties you mentioned and I’ve been through all of those and then some but you can compensate by just being yourself and putting forward your beautiful artistic [I like your user name :slight_smile:] and people will accept you for who you are and accept you without regard to diabetes. I remember years ago having to tell people that diabetes is NOT contagious. I know I was promoted many times at work - even to President/CEO - and there wasn’t any mention about my diabetes even before that promotion when at Board meetings I often checked BGL and took insulin during extended meetings when lunch was brought in. You may have seen recent photos of Teresa May and Donald Trump at a formal reception in England; notice Prime Minister May in her red, short-sleeved gown is openly displaying her glucose monitor on her upper left arm.
As for good insurance coverage, I suggest that you seek employment with a firm that offers group medical insurance - you can NOT be denied coverage under a Company policy and you benefits, by law, may NOT be restricted. If you leave work under most circumstances you will be permitted to continue that insurance coverage. When I was laid off in the depression of the mid 1970’s I maintained insurance for my family and me during unemployment and then for 10 years of self employment - the thing is, maintain continuity and “preexisting” does not come into play.
Now for people your age with whom you may want to chat - keep posting here and you will meet many. Also, use the magnifying glass search near the upper right of this page and put in words such as Teens, chat, etc; some teens on this site have active snapchat and instagram conversations. Also, look on the JDRF.org web-page [click “near you” in upper margin] for a JDRF Chapter near you - the chapter near me has a very active youth group - two teens who hosed our last meeting are now headed to Washington DC to advocate congress.


(Megan) #4

@Dennis @wadawabbit Thank you both. Hearing all this from people much older than me is actually more helpful than if I had heard it from those younger than me or around my age, since you’ve been living with this for years. It’s comforting really, to talk with others who are still living happy lives despite it all.

As I write this I’m feeling much better-my anxiety had been building up for weeks and last night it had just become too much. I’m looking into seeing someone about it, and my mother talked to me about the insurance thing when I mentioned it earlier today. (I had mostly been panicking over it since I had seen the prices of my supplies without it-nearly $300 for a tiny vial of Novolog alone, :sweat:)

I feel a little silly now rereading my original post, though I had been in the midst of an anxiety attack and whenever I get those I tend to ramble, which I’m likely doing now actually.

Anyway, thank you again-oh, and I hope you don’t mind me replying in the same text block for you both but it was easier. Again, thanks!

-Megan


(wadawabbit) #5

Hi Megan. I’m SO glad you’re feeling better today! Please don’t feel silly about what you first wrote. You were feeling what you were feeling, and your feelings are perfectly valid. I’m also really glad to hear you’re looking into getting someone to help with your anxiety. Hopefully you’re able to find someone quickly that you connect with, but don’t feel like there’s something wrong if you have to do some “shopping around” to find someone you’re comfortable talking to. Hopefully you will get a job with great insurance benefits when the time comes, to take that load off your mind; but if you ever do have to pay or of pocket for your insulin (or anything else) there is an app called Good RX that shows the least expensive costs for your medication at pharmacies in your area so you can do some price comparison. Assuming you have good insurance the only reasons I can think of for having to pay full price out of pocket would be meeting your deductible, or if - God forbid - a bottle breaks and insurance won’t do an override to replace it. I found padded sleeves to protect my “Liquid Gold.” As soon as I remove the bottle from the box I slip it in the sleeve so it’s protected if I drop it (of course I would probably be doing some serious and amusing acrobatics trying to catch it, but I’m a bit clumsy so the sleeve is a better bet :laughing:). Available on Amazon and I also found some here (I hope the link works): https://www.pumpwearinc.com/pumpshop/index.php?l=product_detail&p=1743
I hope you do meet some people your age online to chat with. I’ve found people on different forums on this site who say they are looking for people to connect with online, so check out some of the different topics even if they don’t apply to you - you never know who you might find!
Best wishes and blessings with your plans and whatever you choose to do in life. Take care and be well.


(Megan) #6

Thank you!

Oh, and the link works-I’ll likely be picking one of those up since currently I just keep the vials stored in their box after opening. My desk drawer is where I keep all my in use supplies (since when I’m drawing I’d rather not have to go hunt around the fridge or the cabinet in the kitchen for stuff), and while they don’t get rolled around too much, I tend to be rather clumsy as well and whenever they’re not in there I nearly drop them. :laughing: So getting one would certainly be a good idea.

Anyway, thanks again!
Megan


(wadawabbit) #7

My pleasure!
I wanted to share with you an app I found just a few weeks ago called My NetDiary. I was using a hard copy food log to keep records for a nutritionist. It was okay but not very convenient so I tried a few apps. They were alright but none of them were quite what I was looking for - then I found this one. I was reluctant to try it because it cost $10 and I hated to make the investment without knowing if I’d like it (there was no sample to try first); but Google said I had a small amount of time to contact them if I wanted to return it, so I took the plunge - and I’m loving it! It allows you to track BG, insulin, BP and heart rate, exercise, other medications and foods, and has a very comprehensive list of foods “off the shelf” as well as restaurant dishes. I was shocked to find a dish from a small local restaurant in my area! If you don’t find what you’re looking for you can Google it and enter the nutrition info manually. It will calculate carbs, calories etc based on the serving size you select, and if you’re counting calories it will show you your total for the day. I did find there is a $60 annual fee to keep all the bells and whistles after a few weeks but I decided it was worth it. Check it out on Google Play or the Apple store.


(Spring) #8

Hi Megan,
I have been a diabetic for nearly 41 years and as the others, I recommend telling those close to about your diabetes and do not be ashamed of afraid to do a glucose check and take insulin/eat when needed when around people you don’t know. My husband and I were diagnosed within a year of each other and my parents encouraged me not be afraid to take insulin or do a test when in public and I am thankful for that to this day, for example, my husband, our daughter and I were vacationing in Hawaii. One morning we were on a boat to go snorkeling and and while on the boat with a bunch of strangers, I had to take a test, shot and eat. I did all this in front of two boys with their mother and they said something to her, so she asked if I was diabetic, I replied yes and she explained to get boys that I had an illness that required me to do those things to stay healthy and the boys relaxed. So, being encouraged by my parents to be open and honest about my diabetes, I have helped some strangers ask a simple question and many times lead to a discussion and informing them about diabetes. In my book, that is a good thing. My husband was taught not to speak about it and does not like anyone, strangers, employers, etc. to know he has diabetes and that could really go one day.

Sorry for the long story, but I encourage you to be open and honest about being a diabetic and help others learn more about our condition.:blush: Enjoy your weekend.


(Michelle) #9

Hey there,

I am 30 and have been type one for 6 years. I was diagnosed at 23 and oh boy I hear the anxiety factor. I actually recently posted about this. My anxiety is always way worse when my sugar is low and I often worry about my long term prognosis but realistically as many people on here made me realize you do the best you can, seek out help and support and never feel like a burden. I personally try to be proactive with my sugars as I have two young babies and the lows are what I try to avoid which in turn, sometimes gets me too high. Diabetes is unfortunately a life long pain in the ass lol but it could be worse… it is manageable and you can do it- happy to talk any time-


(Michelle) #10

Correction almost 7 years :scream:


(Robert) #11

Hi Megan – I have had Type 1 diabetes for 44 years (diagnosed at age 24) and just wanted to endorse the wise advice of the others who have lived with diabetes for many years, and affirm that it is possible to live with this disease as it becomes part of your new life, as hard as that might be to imagine at this point. And I also strongly endorse the idea of trying to seek professional help for your anxiety issues, which I know can be debilitating at times. If you’re like most of us, you’ll have good days managing your blood sugar, and difficult days (where even when you’re trying to do everything right your blood sugar can be difficult to control). I now realize (after all these years) that my blood glucose number isn’t an indication of my “self-worth”, but simply the result of the fact that diabetes is a very “humbling” disease and we don’t know as much about it as we’d like. I’d also urge you to test your blood sugars often at this early stage (if you’re not using a glucose monitor) so you can better learn how your body responds to different foods, stress, moods, exercise, etc. Especially after a “trying day” with blood sugar control, I try to remind myself to just to do the best I can each new day and try to focus on those things I can control.

I wish you all the best.


(rvedt82) #12

Hi Megan,

I’m 36 and have been a diabetic since the age of six. When I graduated from college at the age of 22 my parents decided to drop me from their health insurance (kind of a sink or swim thing) and the Obamacare law where you could stay under your parents health insurance until you were 26 wasn’t available yet, so there was that, too. :confused:
Anyway, I majored in education and wanted to teach and had a few interviews, but didn’t get hired. Luckily a big company that I worked at as a temp at over the summer hired me pretty quick once I applied so I was able to get my own insurance to cover my health costs.
With the diabetes you do have to make sure you can find an employer who offers good health insurance because the costs can add up quick.
Regarding the anxiety, I have it as well and eventually decided just a few years ago I needed extra help with medication. A part of my anxiety/depression is due to issues with diabetes but also family issues as well. Luckily the medication keeps my stress levels at bay. Anyway, I wish you the best of luck with everything. This is a great site to post on when you need to.

Take Care,

Rachael


(Sarah Flandorfer) #13

Hi Megan,
I see lots of others have posted but I wanted to reach out too. I just turned 30 and was diagnosed at 12. I’ve felt all these things! Insurance was the big looming scary thing for me too once I hit 18/19. For me, I managed to snag a full time job with good benefits, but I know that is not always the case for some. Reach out to JDRF for resources and this BeyondType1 article might be helpful too.

Don’t worry about being a burden to others! If someone feels you are a burden then they don’t fully understand the scope of what you are dealing with day to day. Build yourself a strong support system, whether friends or family or both. Having people in your tribe who get it(as much as anyone without T1D can get it) is huge. My big advice is communicate with everyone around you! I am super upfront with people about my T1D. My friends, every person I dated, it was one of the first things I brought up. Everyone in my office knows and I explain to them the sings to look out for and how to use my Gluc shot. People will ask questions and I welcome it. I spent a lot of my youth managing my diabetes but not acknowledging it as a part of who I was, until I realized it doesn’t have to define me or what I can do but I can embrace it as something that has helped shape who I am. Something that has made me stronger.

As far as anxiety, I can honestly say connecting with fellow T1Ds through JDRF events and getting involved with volunteering for them did wonders for mine. Just realizing that I wasn’t alone and other people go through the same things and understand was freeing and took a huge weight off. Thought if you think you need more support talk to your doctor about it. There is no shame in knowing when you need a little extra help and asking for it.

If you are a social media user and you’re looking for ways to connect with others in the community(because let me tell you it IS a community) check the hashtags for diabetes related things and Beyond Type1 as well.

<3 Sarah


(brookel) #14

Hey Megan,
I know there have been a ton of responses to this post already, but I just wanted to reach out to you because I’ve dealt with the same anxiety/fears and still deal with some of it to this day! I’m 20 years old and was diagnosed at 8. I understand it all. The stress of having a degree and good enough job with good benefits and health insurance by the time i’m 26 is an ongoing fear that I have. I become overwhelmed thinking about it at times. So I understand where you are at in all aspects. I used to feel like a burden but eventually I just accepted that I’m not a burden. This is not my fault and everyone around me is here to support me and help me as I’m sure they all are there for you as well. You’re more than welcome to e-mail me anytime and I can always give you my other contact information as well! Sometimes the only thing that helps me is venting all my frustrations with diabetes to someone who understands me. My e-mail is bav923@yahoo.com

Please feel more than welcome to shoot me an e-mail anytime! Im always here to just listen or help give you the best advice that I can (:


(Janice) #15

Hi Artistic Megan, I have been a type 1 for 64 years, and things have changed since then, . I absolutely agree with Wadawabbit and Dennis. I think the biggest problem with other people is their ignorance, if You can I would suggest that you tell your friends, educate them, they can be your biggest help if something goes a little wonky and possibly your biggest supporters. Don’t think that being a Diabetic has to stop you from doing anything, you are still Fantastic, Energetic, Artistic, Brilliant ,Spectacular , Great, Compassionate , Loving, Beautiful, and so much more. T1D is just another thing that contributes to the Miss ArtisticMegan. It gets easier, trust me, right now things are probably over whelming You know I hope that any one or all of us will give you as much support and help as you need Call on any of us at any time, we’ll help. Have a great day. Bye Jan


(Melissa) #16

Hello! My names Melissa. I was diagnosed at age 11 on March 4th 2003. Ive been a T1D for 15 years now. I can honestly say that from 5th grade to high school, I took care of myself. I had my parents support when I was that little so at least until HS I was in control. However, to be able to help, being completely honest about the next 7 years is important. I got to high school and there I met other diabetics. Some of those diabetics i was friends with were not taking care of themselves like they should have been. I saw this and thought to myself “well, if they arent taking care of themselves, why should I”? They didnt have to check their sugars, take regular insulin, or check their sugars. I wanted a vacation like that. So, I stopped…everything. Stopped counting carbs, stopped checking my blood sugar daily and taking my insulin regularly. I would fake my blood sugars. I would go a month at a time without checking and then go back reset dates and tines on my meter and then do an entire months worth of blood sugar checks by altering dates and times. My A1c rocketed up to 13. There were times I couldnt breath because my chest was so tight because my blood sugars were so high. I would pass out on the floor with cold bottles of water held to my chest. I eventually went into DKA for the first time my junior year. Its terrifying. So for 7 years, I stayed burnt out & Continued to not take care of myself (2008-2015). I didnt have a steady support system in my life to help me stay on track. Finally I met my now husband who learned all he could about my diabetes and commited himself to helping me get back on track. My A1c is now 6.8, I have a Dexcom, and we are 6 1/2 months pregnant with our first child. I couldnt have done it without him or my parents. Having a support system is key in being able to stay on track with something you have to constantly manage 24/7. There are no breaks. There are no vacations. And there is definitely no reason why anyone shouldn’t be able to say i need HELP on a daily basis with this disease that I have to DEAL with on a daily basis. Having support is what is going to help get you through this. Beyond Type 1 is also an amazing app that you can get that has an amazing community of T1D support. Msg if you’d ever like to talk!


(John) #17

Megan,
Don’t sweat it. I was diagnosed 42 years ago when I was in high school. In those days newly diagnosed T1D’s sprang too much time in the hospital and during that time I thought I would never be able to have a “normal”life again. I was very wrong. I have done everything any of my peers has done, traveled around the world, backpacked, sailed in far away oceans. I have a couple of things to offer, most will mirror what you have already heard from other veterans: Tell your friends and workmates, just as a matter of fact. They will all be supportive, and tell you stories of people they have known who took really poor care of themselves. Don’t hide a problem. Most everyone around you will be supportive. If you need a soda, ask. Understand how your body works with respect to blood sugar control. Understanding this will help you keep good control when your routine changes, like during virus, flu, infection, long car or plane trips, time zone changes etc… when traveling, be prepared with spares and extras. I travel with 2x my supply needs and a spare pump when in a foreign country. Find an endocrinologist that specializes in diabetes, and stays current on the latest therapy. Every new therapy that has come along I have adopted early and had better control. I cannot remember what it was like to not have T1D, but I truly feel I am very healthy and don’t think of my self as having anything wrong. So, be smart and don’t sweat it.


(stephensyu) #18

I have been diagnosed with T1D in 1956. I am now 72 years old without any complication. I didn’t have disposable syringe, no glucose meter, no insulin pump…in Taiwan, China. I believe that there are many types T1D with various antibodies besides islet antibody.

Do tell any of your doctors that you have low sugar. Those bad doctors can write DMV to suspend your driver license. I met some Kaiser doctors who should never write me to DMV. It took me a year to get my license back.

You can call me at 415-244-6215 after 8 PM SF time zone.

Stephen Yu


(Jennifer) #19

Hey Megan! I totally understand your concerns! I’ve been there myself! I’ve been a diabetic for 25 years. Remember there are so many ways to get help now. We have all been there! Check for support groups in your area. But please know you are not in this alone! We are all in this together!


(flebeccaann) #20

Hi Megan,

I’ve been T1D for 15 years and I know how hectic life can get with diabetes. I’m sorry you’ve been experiencing anxiety with your diabetes. Something that helps me when I start getting anxious about my diabetes to read this article from the ADA about diabetes distress: http://www.diabetes.org/living-with-diabetes/complications/mental-health/diabetes-distress.html
I hope this helps!