Mentally & Physically Hurting


(Isabella) #1

Hi. I’m 14 years old, and I have had T1D for 6 years. When I was younger I was amazing at keeping up with it - constantly checking, carbing, correction - you name it. However, in the past 2 years my health has been on the decline, physically and now I realize mentally. My parents divorced 2 years ago, and coincidentally that’s when I got worse with managing. It wasn’t intentional, but I guess subconscious. I’ve also hand frequent metal breakdowns in the pas 2 yeas as well - about T1D & other family issues. Whenever I hint at the fact that I’ve been upset, I get brushed off, all adults blaming it on my age & hormones (the #1 thing a teen managing many things hates to hear). Along with that, whenever my blood sugar is high, I get shamed/talked down to for it, versus someone offering assistance, empathy, or general help. All of this - high blood sugar/A1C, school, family, fear of my mental health - is driving me insane, and nobody knows. I don’t know if I’m looking for some magical answer to all of this or someone to relate with, but anything would be highly appreciated.


(Dennis J. Dacey, PWD) #2

Isabella @Isabella.Faba you are doing wonderfully well - I say doing well because you are very aware of the difficulties you are going through trying to manage your diabetes and in spite of those other things going on in your life; you knew that you should reach out. There are other people on here your age who could offer their support and some “wisdom” that they have achieved.

you are doing better than I did - I only “did good” managing my diabetes for about two years before everything fell apart and my health was impacted - well, that was 60 years ago when a blood sugar test result took two days. Yes, the mental strain is immense and not really understood by those around us including the so called medical professionals. Nod and say “oh yeah” when those around you say you can do better and tell yourself that yes i will manage MY diabetes better.

True empathy will be offered by those of us who have been and are “in your shoes”, those of us who know that how hard we try we still get those high readings on our meter - often times there isn’t an explanation. Yes, at times I get some monster number but I say to myself, “that pie was awesome - now make the correction bolus”.

Isabella, you CAN do it! Make a plan for yourself and carry it forward, you do not need approval anyone else - family or school personnel. But I suggest that you talk with at least one member of your medical-care team. That plan could be that you will carry a meter with you and check [not “test”] BG frequently and either take insulin eat a snack wherever you are. In school you DO NOT need to retreat to a nurse-station; it is your right to treat / manage your TypeOne Diabetes wherever and whenever needed [that includes having a BG Meter, Insulin and ‘medical’ snacks with you at ALL times] - United States Public Law 101-336.


(BookwormNerd13) #3

Hey Isabella.
The first thing I want to tell you is that you’re NOT alone. I know it seems like you are. I know it feels like no one gets what you’re going through. But I promise, you’re not alone. I’m 15 and I was diagnosed at age 7, and my mental health has been suffering lately too (yesterday I had a panic attack during the school day because a group of boys were saying awful things about my condition). I’m telling you this to let you know that you don’t have to go through this on your own. I understand, and so do a lot of the other people on this website.
Isn’t it just awful when adults act like all our problems are “just a phase” or “overreacting”?? I hate it. I’m sure you do too. That’s why sometimes it’s better to go to someone who’s your age, rather than an adult. If you have a friend who you can text or talk to about this, that’s a great place to start; if not, that’s ok too–in many ways, that’s what this website is for! And I would love to be your “email pal” if you’d like! My email is abigaelparrish13@gmail.com. Sometimes it can be hard to find someone who really understands; even my closest friends don’t really get it. That’s why it’s important to connect with people who have T1.
The other important thing to remember is that things will get better. I know right now it might seems like there’s no way to fix things. But it’ll get better. And blaming yourself when your BG goes out of range isn’t gonna fix anything–the truth is, it’s never gonna be perfect all the time, and that’s ok.
I hope you feel better soon. Please don’t hesitate to email me.
–Abby


(GL) #4

Hi Isabella,

My heart broke when I read your post and I had to reply! You are not alone! You were a rock star for many years and just managed it and got it done…then it’s like you get the diabetes blues (that’s what I call them) and you’re like this is terrible and get so sick of dealing with all of it. It almost develops into anxiety as it’s constant and something that doesn’t go away and can’t go away. Is there a school counselor or someone you could go into and talk to? I wish there is an easy button and hope someday there will be…but for now it’s one day at a time…or one meal/test at a time :frowning: . High sugars are very hard to deal with emotionally and very draining…it’s crazy to me how much stress only makes it worse. It’s hard enough to be a teenager…adding T1D on top of it is unimaginable. Just know I try so hard to make my sugars perfect and it seems like the harder I try the more frustrated I get and your not alone. I’ve recently switched to the new 670G Medtronic pump and it has helped my mental strain of dealing with diabetes. Not sure if you are on a pump or have that option but it’s worth looking into. Being a mom of a teenager myself, I worry when my kids don’t talk to me…I hope you can find a trusted adult to help you through. Let me know if you need any help…I’ll be your email pal too!
Gretchen


(charoelena516) #5

Hello Isabella,
Let me start off by saying, You are not alone. Having T1D is hard not just hard physically but emotionally as well. The fact that you are reaching out here on this forum, shows how strong you truly are. I too had similar circumstances when I was younger. At first my diabetes was pretty easy to control, but as soon as I entered my teenage years it suddenly became much harder to handle. For me it was dealing with the added stress of school and family dynamics that affected me the most. I also often felt alone because no one seemed to truly understand and often got on my case because of my high numbers. I also use to dread sharing my numbers, especially if they were high, with others and my doctors , because I feared what they might think less of me.However, the most important thing that I later learned is that your numbers are not a reflection of who you are. No diabetic is perfect, and is our job to try to learn from our poor numbers and to grow to understand them.The best advice I can give you now is to reach out to your doctor and explain to them how you feel both physically and emotionally. I also suggest getting resources for your loved ones on how to help those living with diabetes. Also, see if there are any support groups or others around you that deal with having diabetes. Finally I also recommend that you continue reaching out to people like us on here.
Just remember you are not alone in this and if you ever need someone to talk to and just vent feel free to reach out to me personally if you would like. My email is charoelena516@gmail.com


(Nichole Acosta) #6

@Isabella.Faba I totally understand what you’re going through as a T1D navigating it when my parents got divorced as well. Your emotions can affect your bloodsugars and your bloodsugars can affect your emotions. What’s helped me most is to put alarms on my phone to check my bloodsugar and eat on time. I also wrote…alot during this time. Finding a creative outlet for your emotions is key to controlling them. Coloringbooks, yogoa, whatever relaxes you, schedule time to do it. It’ll truly benefit in the long run. Jumohealth.com is also a great resource for young adults of various health conditions. Hope all this helps!


(RichardV) #7

I was diagnosed in 1945, when I was 6. After 72 tears with type 1, I do not have any serious complications. The early years were the worst since there was no device for testing blood sugar at home, and no fast acting insulin. No computers where I could talk to other type 1 people. I felt very alone, and did not meet another type 1 for many years. I was frustrated then, but I have had a wonderful life, and you can, too. The life expectancy of type 1 individuals is so good in the US. It is almost as good as it is for non diabetics.
Good luck to you in the years ahead!!


(joe) #8

hi @Isabella.Faba there are many of us here who also got bit by the burnout bug. I don’t have a lot to add to the other comments - other than you’ve seen both sides of this thing now - the side where you are totally medically compliant, and the side where you are so exhausted you can’t do a thing or feel like your head is going to explode.

all I can tell you is you are stronger than you think, and with t1d… “if it is to be it is up to me” there’s no magic, no technology, no best endo, no super diet or vitamin - it’s just you. you are already talking about making a positive change, so the very next step is to begin.

the only advice i have is for you to do what is manageable for you - and believe it or not - keep talking about it. everyone here gets it. good luck


(Suzy W) #9

Hi Isabella, I just wanted to add a couple more things 1) when I see any doctor now one if the first things I tell them is no brow beatings allowed. They are there to help, not discourage or harm. 2) I rely mainly on 2 books for realistic doctoring advice “Think Like A Pancreas” and “Diabetes Solution”. Both written by T1D docs who understand everything! Dr Bernstein has excellent video series on UTube as well Diabetes University. I know it can suck, but remember you will have these ups and downs and it’s ok. You’re ok. Hugs


(pamcklein) #10

Hi Isabella, I have had T1D since the age of 2 1/2. When I was a teen, I too had difficulty with my BGs. I saw a psychiatrist for depression (a friend from school recommended him to me and he worked with me on the cost so I didn’t have to tell my parents I was seeing him), and then found a new endocrine who helped me get my BGs under control - - I just told my parents I wanted to switch doctors. I was 17 yrs old during all of this, so not much older than you. The endo I switched to was recommended by a friend who is also a diabetic and she told me he was great. Thankfully, he was!

So, my recommendation is to look around. Figure out what you need. Need someone to talk to about depression? There is usually a school psychiatrist. You could start there. If not, the school nurse may be able to help, or even a trusted teacher. Explain that you’re feeling depressed and think you need some help. If they tell you it’s just hormones, explain that you feel it’s more than that and really want to see someone. Don’t give up. Stay calm and explain how you are feeling.

You don’t say if you’re happy with the care you’re getting with your diabetes. Are you seeing a pediatric or adult endo? Another change I made when I was about your age was I switched to an adult endocrine. The pediatric endo I had been seeing kept insisting I needed to gain weight. He thought I wasn’t growing enough. I had already put on over 20 lbs and it wasn’t making a difference! I convinced my mom that I needed to get another opinion as I wasn’t happy with his treatment plan. It took some convincing, but she finally agreed.

So, as others have told you, don’t give up! You are on the right path to feeling better. Just keep at it!


(ReneeM) #11

Hi Isabella, One thing that helped me when my son was first dx’d was reaching out to other parents who had kids with T!D and people with T1D themselves, three years in and I continue to learn from them and also see that you are NOT alone.

The JDRF holds “Type 1 Nation” each year in our area, and my son and I go, the first time he ever spoke up in a crowd about his type 1 was there in a breakout session with other kids like him, before he only wanted to hide it. So have “your tid tribe” where in-person or online can really help. This site, and FACEBOOK have many peer groups, search teens with type one or similar and you will find, I even met a goup of t1d facebook friends at a type 1 nation event and they loved the support. The JDRF in your area may also have in person groups.

You are making first steps by even joining this page and keep that out reach regular and you may find that seed of wisdom that grows into a tree.

Best of luck and reach out here anytime.


(ReneeM) #12

Sorry, one more post, “shaming” people is an old school way of managing your disability. The type 1 community is thankfully moving away from that because it does not help and causes further mental distress. Educating your family on this fact is another tiresome burden on your shoulders, slow but sure I bet you can educate them, refer to blogs, doctors etc and hopefully over time they will get it, but it won’t be fast or 100% so
have patience.

American Diabetes Assoc (ADA) does a lot of advocacy, I believe they have a legal help line, if you feel you are being shamed at school that can be a form of bullying and perhaps the nursing team needs a more up to date education. The American Diabetes Assoc. has a great website and I believe a legal call-in line where you can better understand you rights at school, or JDRF site does have school packet with nurse and teacher info you can share.

And ask here and on facebook if anything comes up at work or school many people here many have answer b/c they have been through it.

Bottom line support not shame and bullying tactics work best and that is where things are moving to.

Fact-about 60-70% of people with Type 1 DO NOT MEET their A1C - so you are NOT ALONE here. This is not an excuse to not meet it but rather says you have a hard job and people should HELP you roll the rock up hill- not say get there faster!

We need to educate people more about the facts and data behind this disease, it is not a walk in the park.

Again, reach out ANY TIME!!!


(Amanda) #13

I’ve been type 1 for nearly 33 years, since I was 3 1/2. My blood sugars and stuff were great until I about 16. It got hard and I didn’t get better about until about 5 years ago!

You’re a rock star trying to deal with a big time heavy thing early in life. I know you know your health is important. The funny thing, and I didn’t figure this out until much older, when you have one endocrine issue (diabetes), combined with hormones and depression, it creates a cycle of diabetes affecting your mood and your mood affecting your diabetes.

If you can see a counselor at school, give it a try. If you think your parents will be open, suggest finding another endo and see if they’ll be open to therapy, too.

The most important thing, don’t shame yourself for not being where you want to be, no matter who else may try to shame you. It’s a balancing act and no one, absolutely no one, gets it perfect all the time. All you can do is do your best. And ask for help if you need it.

Good luck and let us know how you’re doing.