What would you have wanted someone to tell you when you were newly diagnosed


(Gillian) #1

My best friend was recently diagnosed. He is in college and is finding himself struggling with a new daily burden, asking why him, and getting tired of having to constantly check his levels and take insulin shots already. I have never struggled giving advice until now and I want to help my friend. What do you wish someone would have said to you, what was something someone told you that really helped, or any other advice. Thank you!!


(Amanda ) #2

Reassure him that he’s not alone. Tell him about this website and see if he wants to join us. I’d love to help him if he has any questions. I might be able to answer them.


(Dennis J. Dacey, PwD) #3

Hi Gillian @Gdms, A Warm Welcome to TypeOneNation!

I really admire your thoughtfulness and your desire to help your friend. When I was diagnosed, mid 1970’s, I wasn’t told anything other than “you need to take insulin every day and be careful with what you eat”. There was something else my family was told that I’m really happy no one told me - and it has to do with how this autoimmune condition your friend is now sharing with us, TypeOne Diabetes was referred to as “Juvenile”.

What I share now with others with T1D and especially with newly diagnosed and their loved ones, is that living with diabetes isn’t easy but it does after a time “almost” feel easy as we learn to listen to our body and somehow learn to balance activity and food with insulin. That takes a lot of practice and involves frustrations. But most important, there isn’t any reason that diabetes will keep you from achieving your dream and living a full, rewarding, active and long life.

How is that done: Read everything you can, from trusted sources, about TypeOne and think how that will apply - each of us is slightly different - to yourself; ask questions and learn. About 30 or 40 years ago I made diabetes “my science project”. For you Gillian, read the stuff to and be supportive - but do not try to be the boss - let him grow to trust you and let him bounce his thoughts [and his venting] off you; the only time I want you to be “dictator” is when you sense his BGL [Blood Glucose Level] is low or dropping - MAKE him eat.

One of the best books, I’ve been told is “Think Like a Pancreas”. There are many people here with long term experience with diabetes who will offer you and him support and information - we are here for you.
what I wrote above is just the tip of the iceberg but it is a starting point.


(joe) #4

In my opinion, there are no magic words, there is nothing you can say that will take the pain or the isolation that your friend may experience, away. It is possible your friend may even resent that you can go about your life without all of this new stuff, while he has to test and poke and inject and count carbs. It is possible that anything you say will only make his feelings of being alone with a chronic disease worse. My simple advice is to not try. Whatever your relationship before, that’s the model for going forward. as long as YOU don’t change the comfort in knowing the relationship is intact and unchanged may be the strongest thing that you can do.

If you had a relationship where you goofed on each other about everything, then continue to do so and do’t treat diabetes like some sacred subject. good luck.


(Sal) #5

I would have wanted someone to tell me that I will be just fine. That it will be a challenge at times, but at the end it will become routine and I will be fine.

I would have wanted someone to tell me that it’s unhealthy to think about and obsess over long-term complications.

Most of all, I would have wanted someone to tell me that it’s not my fault, that there is nothing “wrong” with me as a person, and that I should continue doing whatever I was doing before and not let this get in the way.

When I say “someone”, I don’t mean my parents and doctors. I mean friends and other people with diabetes. There is nothing like hearing from other people with diabetes (that have had it for some time) that all will be OK.


(Carolyn) #6

Hi Gillian! Kudos to you and your desire to help your friend. I really wish someone had told me it’s okay to be angry and frustrated. I was diagnosed about 2 years ago, and during my own learning curve I’ve had to process some heavy-duty feelings of anxiety, anger, and especially loneliness in dealing with day-to-day T1D management. All of the little life interruptions get so old, so fast. Think about it–basic human needs such as food, sleep, social time and feeling safe are ALL messed with, with T1D. It is normal to be freaked out for quite awhile when suddenly how you eat, how you chill with friends, your favorite physical activities, and your self-concept changes without warning. It is okay to be mad. It is a crappy hand to be dealt.

One of the things that helps me cope is to channel frustration into something physical and/or something I just love doing. For me, that means exercising, spending time outside, hanging out with family and friends who “get it”, getting lost in excellent music. Doing these things helps me have mental breaks for a disease that permits no others. Best of luck to you and your friend.


(Taylor) #7

Okay this might not be the best advice, but it really helped me and it’s still what I remember on my worst days when dealing with diabetes.

I was diagnosed at 11 and extremely late because my pediatrician didn’t listen to my symptoms and kept brushing it off as a virus. Long story short, I went to a different doctor, he diagnosed me with T1D and I was sent to the hospital immediately to start treatment. I remember sitting on the table at the doctor being like I’m not crazy and thinking I would just get antibiotics and be fine in a week or two I gladly fell asleep for two days. Well I woke up only to find IVs hooked in my arms, nurses and doctors poking me for this and that and then finally being told exactly what was happening to me. All I wanted to do was eat and the nurse said okay sweetie it’s tjme but you have to take a shot first. I remember sitting there with the needle crying. Was this my new life? If so, it was over. I didn’t want to poke my fingers and i certainly didn’t want to poke my fingers. Plus, who could relate to me? I felt like a freak and was mad at my body for betraying me. I can only imagine the grief my parents felt for me but the next day after regaining strength and lots of crying, my dad told me he wanted to take me on a walk. Feeling extremely sorry for my self I went. He took me down to the pediatric cancer ward and he said I want you to see this. And I said what still feeling extremely sorry for myself and he said I want you to know I don’t understand what it’s like to be poked with needles everyday for the rest of my life but what I can tell you is you are lucky. You’re going to have bad days but you get to wake up each day knowing you have tomorrow and that’s a gift. This is a hurdle but you will always have tomorrow and I know you’ll be okay. Some of these kids and these families aren’t so lucky. Suddenly, I didn’t feel so sorry for myself. He was right. Everyone kept telling me I was going to be okay and for the first time I felt almost selfish for feeling how I felt.

So moral of the story is, your friend will need time, and diabetes does suck, but it eventually becomes second nature like breathing and you do it day in and day out but you survive. When I think about the past 14 years of my life, I don’t feel like I’ve missed out on anything or really have had to give up my life. It’s definitely a part of me I wish I could change, but at the end of the day I’m in realitevely good health and it could honestly be a lot worse. Having someone point that out to me, helped me but I also know that might not help everyone. But just knowing it gets better qnd Knowing that I wouldn’t have to change my life is huge and I’m glad people kept telling me that and that my doctors encouraged me to live my life as I wanted because I have and I can. I also think it’s important to know that it’s okay to cry, it’s okay to get angry, and it’s okay to ask why because in the end it makes you tougher, it makes you stronger and when you think about your blessings you realize it’s not all that bad and just having someone tell me it’s okay to let this feelings out helped too.


(Gillian) #8

Thank you so much! I will definitely order that book soon, what a great idea. I think it would help his comfort levels a lot getting the information for himself by reading.


(Gillian) #9

Thank you so much for your reply! I have been scared to suggest changing his thinking, but it has been several months since his diagnosis so maybe it is time to help introduce a new approach to his thinking because you are very right about obsessing over a long-term complication, it can be unhealthy in a way!


(Gillian) #10

Thank you so much! What you said about “little life interruptions” is almost exactly his words.


(Gillian) #11

Thank you so much for sharing your story, that sounds so scary! Also, what a magical moment for you and your dad! It is great to know that for someone who has dealt with this for a while, you can look back and not feel like you have missed out on anything, that is so great to hear.


(Hana) #12

I was diagnosed on my Europe summer vacation, and the rules about eating are way stricter there, so anyways they told me I couldn’t chew gum anymore and I flipped out! Wish I was in the US when I was diagnosed!