Hi. I’m new here and just found this website. I was diagnosed w/ T1D Feb 2012 right before my 15th birthday. Before that I spent about two/three years getting really sick. By the time my mom took me to the hospital my hair was falling out in clumps, my skin was yellow/grey/pale, I wouldn’t eat solid foods, I urinated every 1/2 hour, my mouth was constantly dry, I had been throwing up with the “flu” for over two months, I had lost over 30lbs in that time period, and I could barely walk or stand. I was also having horrible mood swings. I had always been a sensitive kid but my mood swings became intense and all consuming. I stopped going to school for those two months because I could barely walk across my apartment without collapsing, I just didn’t have any energy at all. My parents blamed me for my sickness and so did my grandparents. During this time they all discussed sending me to a boarding school/ drug rehabilitation center because they assumed I was doing drugs. My grandparents came to visit about a week before my trip to the hospital and my grandma thought my dry heaving over the toilet after they took us out to Mexican food for hours was caused by a drug addiction. She began “exorcizing” me, trying to cast out satan. I can’t explain how this made me feel. There I was slowly dying in front of them and they all blamed me. The day I went to the hospital my brain was so foggy I could barely speak a coherent sentence. On the day I was diagnosed my mom forced me to take an hour long bus ride to the hospital because she didn’t have a car and did not want to spend the money on a taxi. I threw up in a plastic bag as people glared at me the whole trip there. When I got there and they did tests and stuff my mom acted annoyed at me. When they all found out I was T1D they were all in disbelief.(shortly after my diagnosis I was diagnosed with Bipolar Disorder as well) I spent about 5 days in the hospital getting stabilized and learning all the stuff they teach newbies. It all happened so fast and I was so sad, angry at my family, and overwhelmed that I could not absorb all of it. My parents didn’t even try paying attention in the hospital.(my Dad’s first move once entering the room where I was recovering was to turn on a sports game) They probably felt like since I was a teen I was more than capable of taking care of it on my own. This was not the case at all though. I developed Diabulimia after only a few months. I refused to take my insulin so I could stay skinny( I was always a bit over-weight as a kid). I continued to get sent in and out of the E.R. with extremely high or low blood sugar levels. My liver began to show damage and I was not getting my period at all. I hated myself and felt so mush shame I would not talk about being a diabetic to anyone, not even my best friends at school. I only took insulin in bathroom stalls because I was scared of judgment when I did take it. I developed extreme social anxiety and as a result I barely leave my apartment now. I don’t spend any time or talk with my parents because I started to disdain them. I visited my Dad last summer and he literally forgot I was a T1D, like I saw the surprise in his eyes when I said to him “don’t you remember I am a T1D?” after he asked what my Blood Sugar Monitor was. My Mom can’t even remember if I am suppose to take insulin for low or high blood sugars and on more than one occasion I have had a blood sugar bellow 60 and she has suggested “I take some insulin quick”. As a result I NEVER talk to my parents about my health. I feel like I can’t. None of my family helps or supports me in any way and it feels like they never have. My little brother and his friends have cracked jokes about diabetes in front of me while I helped out at his birthday party. I feel bad for saying this but I feel hate for my family and their complete lack of understanding. The only person I talk to on a weekly basis is my fiancé. We meet in HS and he has literally saved my whole life. He has worked with me for a solid three and a half years now just to help me get over my Diabulimia,(which I still struggle with but I am able to push the “thoughts” out of my head most of the time) convincing me I was beautiful to him at any size( when we meet I was very skinny and I was so scared he would be grossed out once I started gaining again), getting me to exercising regularly, and helping me eat a healthy balanced diet( my cholesterol was 226 and now it’s 180 thanks to our diet). He even works TWO JOBS at the age of 20 just to let me stay at home and relax and focus on getting better. If it was not for him I would be dead. I attempted suicide at the age of 16 and after my Dad drove me to the E.R. to get me stitched up he kicked me out of his house and I had to live with my mom. Being Bipolar and having diabetic mood swings is not a good combo and I know that. There have been multiple suicide attempts but for some reason none with my insulin. I still struggle with suicidal thoughts everyday and occasionally I still self harm. My fiancé is trying desperately to help me but he feels like he is failing and I can see it crushing him. He resents my parents and family for “messing me up emotionally”. I guess I would have probably taken everything better with support but now I just feel incredibly lonely. My Dad dropped me from his Insurance and I have state which is less than fantastic. As a result I do not have an Endo doctor. I just see a regular doctor occasionally and pick up all my supplies as needed. Anyways sorry for the rant. Me and my T1D are not on good terms.
Hi Gloomy, I hope this doesn’t come out wrong but I am so glad you posted. I was beginning to think I was the only person who was type 1 with a screwed up family and people telling you that you were crazy for thinking you were sick, I also was accused of doing drugs smh. I’m newly diagnosed and did not have the same honestly traumatic discovery of this disease that you did. For me I spent many years gradually getting more confused and forgetful but being diagnosed with major depressive disorder it was easily camouflaged under tears and a feeling like there was no reason to live although I personally never had suicidal thoughts I just didn’t want to live anymore, if that makes sense. Your story really reminded about the month I spent with my father just before I found out. See my father (he’s type 1) was not around for the first 30 years of my life at all. I’d get a letter for my birthday, maybe, and so I never spent much time around him or my aunt and cousin on his side who are also type 1. What time I had spent with that side of my family all they ever tried to do was control my diet and never bothered to explain to me what the symptoms were. By the time I visited this last August I was very confused and forgetful a lot of the time. And as I walked around talking about how it was cold but I couldn’t feel it, or they saw my hip pain and my confusion sometimes, they never said hey Jeanne you’re probably diabetic , let’s get you checked. They questioned about being born disabled, like with mental deficits, and assumed I did a bunch of drugs and ruined my mind. They saw how I never stopped drinking, and said nothing. Look I am so happy for people blessed enough to have a wonderful family but the truth is sometimes families are just shit. I think that you’ve started a beautiful family with the man you love, a family can definitely be two people imo. So continue that family, grow it by adding people you can actually trust. I’m not saying don’t love the family you were born into, I personally have not found a way not to. I just think you have a better family with him. But really you need yourself before anyone else, you are not bad and you did not deserve what happened to you. I only say that because I have to remind myself sometimes. Also I’m glad you’ve found this place, most of the people are really nice it feels so good to get answers to any questions from people who have been there, plus it never takes long to get a reply.
Thank you so much Jeanne. I teared up a little. I hope you are doing better now that you are diagnosed but I’m also very sorry that it took so long for your family to help you get a diagnosis. It’s strange that your father having T1D didn’t think to get you tested immediately after you started showing signs. The first couple years were so hard for me that I get emotional thinking about others having to go through similar circumstances. My fiance is the light of my life and the reason for my existence. I know I’m not strong enough to go through my life without some sort of help/family and the fact that he so readily is there for me and always has been right from the beginning is amazing. I am a pessimist and don’t expect much from people, society, or the world so when he jumped into my life and didn’t even flinch when I told him about my T1D( which took me two months just to work up the courage and tell him when we were first dating) I was sort of astonished that people like that could exist in my life, sure in other people’s but never in mine. Getting married to him and living the rest of my life(however long that may be) with him is what is keeping me going. I feel really blessed in one aspect of my life and that is my partner(and his really nice family who put me on their Christmas card as a member of there family last year and let me live with them so I wouldn’t be homeless at 19). Also this site seems really helpful and also like a great outlet for people with T1D that need to vent or ask questions. I’m a little disappointed that I did not find it sooner but oh well.
Feeling lonely is, unfortunately, one of the emotional side effects of T1D. I’ve had it for 36 years, and i can tell you that there are times I feel like no one gets what I am going through. What I CAN tell you is this: It gets so much better! The support from sites like this, active support groups that exist, and even your local JDRF Chapter can help you realize that you are not alone, and there are people listening, caring, and wanting to help you cope! Your story of diagnosis is heart-breaking, and I am so sorry that you had to go through it that way. No one should have to endure what you went through. Denial is a big part of it. As a Medic, I constantly see cases where a parent’s denial leads their child down a dangerous medical path. Even though T1D has been around a very long time, it’s surprising how little education is out there about it. I was diagnosed in 1982 at 18 months old. My Mother had to fight every day care worker, teacher, and caretaker I had to educate them on what I had, how to treat it, and what to look for. Flash forward, I was often the only (diagnosed) Diabetic in my schools, so we had to get my Doctor to educate the School Staff and Nurses on what to do. As I got older, I became that source of education. I spoke at schools, colleges, and even Diabetes Month events to help broaden the knowledge of the community. I suggest you try to do the same. It is very rewarding to help solve the problem, while helping yourself at the same time. Even today, I am amazed at how ignorant to T1D people can be. They mix it up with Type 2 all the time and say the whole “you should just lose weight,” or my personal favorite: “should you be eating that?” Sometimes it’s frustrating, sometime you will get angry. That is normal. But, know that you have an ENTIRE COMMUNITY of us ready to help you cope, help you educate the community, and help push for a cure! I recommend joining your local JDRF Chapter, as they have resources that can help! Good luck as you go through the learning curve. It will get better! We are here if you need us!
Hi Patrick! First of all thank you so much for your efforts in educating others about T1D. I don’t talk about it publicly with anyone because of the amount of ignorance I have encountered(I get the “should you be eating this/can you have this?” all the time from family/ my partners family and it honestly offends me a bit) coupled with the feelings of denial and shame that I still have.(I never take insulin in public places even if I feel extremely sick and wait until I can find a public restroom which gets tricky in the city I live in but I’m too scared of the judgmental looks on peoples faces)Talking to my fiance about it sometimes can be hard let alone with a stranger. The fact is that I’m still really angry, frustrated, and bitter that this is my lot in life( and that it has to be so many others too ). I want to get over my negative feelings but every time I go to take a shot I feel like smashing my head against a wall and I generally put off eating until I feel like fainting. Hopefully with this site and reading about other peoples similar struggles I will be able to change my mindset but part of me is scared that I’m never going to get over my diagnosis.
So sad reading your struggle, Gloomy Sunday. I’d suggest getting a diabetes educator who has Type 1 and an endo who has Type 1. Check out TCOYD.com for tips from Steve Edelman, MD, who has T-1. T-1 health professionals won’t look at you like you’re not telling the truth when you describe your life with diabetes. It will be possible to get your blood sugars in range most of the time. No one does it all the time. Also, there’s a doctor at Johns Hopkins named Kay Jamison who is bipolar and can probably help you get your meds right. She’s written several books about being bipolar
Thank you but unfortunately my Insurance won’t cover an Endo specialist. My goal this next coming year is to be able to afford my own insurance because the kind I have now is really not that great. They just gave me 50 test strips for a whole month(I use to get a pack of two little bottles of 100 now just one with 50) which is scary because by that math they expect me to only check my Blood Sugar levels twice a day. As for getting help with Bipolar I am currently on anti-depressants(just recently got back on them after a half year break) but over the past 7 years all the different “cocktails” of anti psychotics and anti depressants given to me have failed. I read online there are some people with Bipolar Disorder that medicine can not help and I am begging to feel like that’s me. My fiance is helping me find a counselor to talk with( again it’s hard finding a good one that takes my insurance) but hopefully that will help out a little. Thank you for mentioning Kay Jamison I will look up her books! I’m always interested in learning more about my weird brain and how it functions.
I volunteer with an organization called Diabulimia Helpline, and I think you would find our online support group really helpful https://www.facebook.com/groups/DiabulimiaSupport/ There are a lot of people who have been through or are currently experiencing the same thing you are, including unsupportive family. You’ll find a lot of “I know how you feel” and “This is what helped me.” We also have a lot of resources on our website from articles to people’s stories, www.diabulimiahelpline.org. And we have an insurance specialist who might be able to help you get an endo or a therapist. You can send an email to firstname.lastname@example.org. This is not a journey we are meant to travel alone.
@GloomySunday96 hi. I am very sorry to hear about all of your troubles. After having diabetes for some time now, I do not expect anyone to completely understand. If I based my happiness on other people knowing what diabetes was or how it is different than type 2 or even for what insulin is used for… I’d be unhappy the rest of my life. I deserve to be happy.
There’s an old quote “If it is to be it is up to me” and it truly doesn’t matter who the person was (William H. Johnsen if you are interested) or what the person meant… to me it is very important and began a change in my attitude from denial to eventual acceptance. When I stopped fighting with diabetes, and dropped the anger I had, essentially with myself, it became easier to take care of myself and not feel so defeated.
you can’t pick your family. and “normal” is not a description of relationships… it’s only a setting on a washing machine.
you are stronger than you think you are, and I hope you find a way to have peace.