I’m 27 years old and was diagnosed with T1D at 12 months old. There is so much I want to say in this post that I don’t know where to start. I’m on meds for bipolar and have been advised to see a therapist. I’m in this mindset that a therapist can’t help because he/she doesn’t truly know how a diabetic feels because although I’m bipolar, I feel like a lot of the depression comes from diabetes. I know it’s not the right mindset. But that’s why I wanted to find a support group. Also, I had an endocrinologist tell me last year that because I’ve had diabetes for so long, this is the time complications are going to start happening. I’ve spun out of control and have no motivation to fix it. Any advice? Should I see the therapist? Is it selfish that I hate this disease?
hi @savannahday,
people who have diabetes do indeed have more issues with depression. I think it has to do with an incurable, difficult, painful, PIA disease that, if you are doing it good enough, you get to feel normal. who would argue with that?
can’t you check with your phsych doctor (or whoever prescribes your bipolar meds) and see if you can get a referral to a therapist that has experience with chronic illness or with people who have suffered trauma? IMO the stress would be the same and maybe if they had experience they could be helpful.
did your endo really say that? I mean, aside from being a really stupid thing to say, it’s also cold. i have had t1 for 36ish years and so what? If I saw your endo they’d tell me to get ready to die? there was this guy Richard here and on other boards who had t1 over 60 years.
anyway selfish? yes. so what? what’s wrong with not wanting to be sick. I don’t want to have diabetes anymore either. the thing is, that if you hate diabetes so much you stop taking care of yourself then you have a different kind of problem too, call it depression, or burnout, or whatever. I had my issues like that too, it went on for many years. you probably want to take care of that one first.
there is a good book called “Diabetes Burnout” by William Polonsky, do an amazon search for it I think it’s 14 bucks, I thought it was worth the read.
I hope you feel better.
the truth, it’s very difficult to find a single medical provider that can address the fact that you’re a type 1 diabetic as well as suffering from depression. during periods when I go through depression I find that a mental health pro (not experienced in t1 diabetes) had helped me with the the mental health piece, but nothing like a type 1 peer goup is what has helped me with the diabetes struggle.
You are not alone, and it takes finding a team to help fine tune your well being (I haven’t had luck finding a psycho-t1d-nutritionist-comedian-life coach-cheerleader) and I have found that letting my immediate family know about what I am going through and a team of groups, people, and orgs to cater to my myriad needs to create the right support network… unfortunately this does take a bit of leg work on your part but you absolutely have the right to be selfish about searching for a combination of people and groups that can help meet your needs. I think this type 1 nation group as a whole is always here to provide advice help and if nothing else to commiserate the fact that you are not alone and that there are others going through similar identical or even more aggravated situations.
definitely as Joe suggested, find a better endocrinologist because it’s **** to provide that kind of advice.
my apologies I mention depression in my response but my comment still applies to any mental health situation, I didn’t mean to reduce your diagnosis to depression.
Hi. New here & realize this discussion occurred a while ago, but I’ve been looking for a support group for over 30 years; people who would understand the day to day & moment to moment issues. I was diagnosed with T1D (back when it was only called Juvenile Onset Diabetes- because back then kids didn’t ever get type 2- I think that one fact alone is an excellent example of how misunderstood T1D really is.)
So, diagnosed at 8 years old and will be turning 50 in 2016.
It’s one hell of a long time to ‘stay on top’ of the disease. I have to admit that I get freaking MAD when I hear doctors, or even people w/ T1D, talk about what a normal life you can have. SOMETIMES that’s simply NOT true! I find that people not only don’t understand the differences between type 1 and type 2, but they automatically assume that you have the disease because you eat too much, don’t exercise, are a couch potato, etc… Nor do they understand how vulnerable we can be to THEIR cold virus, or THEIR flu- because they think flu shots make you sick- so they don’t get one.
I could go on & on & on…
Overall, I am a happy person and have been able to do most things I wanted to do. I finished college (English Degree) I left my hometown, I got into grad school, I got a master’s degree in social work (and have mostly worked as a clinical social worker w/ abused & neglected kids. I feel very safe in stating that there really aren’t mental health therapists out there who work specifically with T1D or even anyone who lives with a “Chronic” disease. I so wish there were!) and I’m engaged to be married in a few months.
All of that is great, but my career has suffered (possibly ended for good) due to my health. Along w/ T1D I also have several other Auto Immune Diseases. I get sent from one specialist to another and nobody seems to know how to help me manage ALL of these diseases at the same time. My PCP tries & she’s a wonderful person, but she’s overworked and short on time and her employers (Kaiser Permanente) directs her to-- to direct me— to whomever the appropriate specialist is for whatever new disease I get or how to treat it.
I seriously could write a book about the medical maze I’ve been pushing myself thru for the last 41 years. It’s damned hard work & unless they’ve dealt with it themselves, they have NO idea whatsoever about what your life is really like. You know why we’re depressed… because we have a serious disease that will kill you if you’re not always on guard. We have a damn good reason for being depressed.
Well, I’ll stop now, especially since I don’t even know if anyone will read this. I’ll end it by saying that it would do me a world of good to have people to talk to who live this- who “get it” and who know what a struggle, stigma and burden it can be. I want to talk to people who understand being depressed as well as ANGRY (that’s where I am now. depression is generally considered to be anger turned inwards/internalized by the person. In many ways its healthier for the “patient” to get in touch w/ their anger, rather than staying in a depressive state. Just my opinion & a theory I subscribe to)
SO… if you’re out there and you recognize your own struggles in this letter… please write. If you know of a real life support group (I’m in Colorado) let me know about it. Etc…
It’s time to check my blood sugar… but I’m STILL here!
hello @pellison66, congrats on your upcoming wedding AND a big birthday. I just hit 50 a few weeks ago, jeeze louise we’re getting old yeah?
I have nothing to add but felt the need to say I hear you. I do think that certain therapists, such as anyone with trauma and stress/trauma experience (and hopefully success) could be good at helping us. I was in therapy for “generalized anxiety disorder” which…in my defense… was how I was feeling at the time but the tools I was introduced to were very helpful in getting me over a very low spot in my life.
anyway when you said “normal life” it reminded me of a sweet little old lady who told me that “Normal” was just a &%##@ setting on the washing machine. I was so shocked that I swear I’ll never be able to forget it. Truth-be-told, there is no normal life… there’s just life.
and hello @eddieu, the way I frame the importance of TypeOneNation is like this: it’s not really commiseration for me, I prefer to think of our groups and interactions here as “a way to share our experience, strength and hope in order to solve our common problems”.
-Joe
Hi Joe,
I’ve been meaning to thank you for responding to my post & everyday life-stuff got in the way. I’m hoping to make some connections w/ others who have had T1D for a long long long damn time! 
I think I struggle w/ the issue that I don’t know anyone who has lived with what I have & because of that it can feel pretty lonely sometimes. I’ve got an amazing fiancee, he couldn’t be a kinder or more patient person and I know how lucky I am to have him!! But sometimes I just want to vent to someone who’s been there, is there or has done it. For me, its hard to know what to do with the anger I feel about being unlucky enough to have this disease. I was a little kid when I was diagnosed & my parents were divorcing & my dad had an evil new girlfriend (who later became an evil stepmother for many years) and I mostly remember being extremely afraid.
I think I must have missed the “acting out” phase that many people go thru- where they totally stop taking care of themselves, let their blood sugars go where ever & don’t eat right & on and on and on… For me, I think fear kept me at least trying to keep the disease under control (altho adolescence was a nightmare as far as glucose levels go) And then, there was college, leaving home, work, grad school, lots more work/profession and there just wasn’t a time in my life where I could really let my guard down and actually feel the anger, frustration, etc… that I had because of the disease. It wasn’t until I had a medical-emotional-burned out episode that ended w/ me quitting my job (long story but it was so stressful I literally couldn’t get healthy; at one point I was on 4 different antibiotics to treat a sinus infection that I had had for months- literally)
So, once I was unemployed & didn’t feel like I had to put a good face on everything, didn’t have to keep trying to convince a boss or co-workers that I felt fine, that I was healthy (when I very clearly was NOT) Anyway… I think I finally felt like I didn’t have to keep pretending & my personal and professional life were finally stable enough & I was emotionally strong/healthy enough (thanks to a very good therapist) to finally feel all the feelings that hadn’t been ‘safe’ to feel earlier.
So, while I was dx at age 8- it isn’t until I’m almost 50 to really process how I feel about all of this Diabetic stuff. AND I’ve been dx with several other Auto Immune Disorders and get so frustrated when my ‘team’ of specialists don’t see the big picture. So many of my symptoms overlap-- the different disease impact each other & when I feel crummy its extremely difficult to figure out what it is.
So, yeah… that’s my story.
Now-- how to process all the feelings that I’ve kept bottled up for so darned long? And, what do you do about them anyway? There’s no person to blame, there’s no known reason for why I have it & that’s a challenge too. Why me? And why all these other illnesses where some part of my body quits working or goes haywire (I’m having lots of problems with my thyroid-- it was making too much thyroid hormone which made me sicker than anything ever has. It was literally a nightmare and I went undx for way way too long-- another thing I’m mad about)
It’s hard to get my head around having 4 separate diseases that essentially develop because my body is attacking itself or has shut down. In essence I’ve done it to myself. Why? And why doesn’t the medical community pay more attention to those of us with Auto Immune Diseases. We all have a lot of things in common, one of them being that no one knows WHY we get these things & nobody knows how to cure them. There is no cure, only “management” for the rest of your life.
Ugh!
I know there are more positive ways to look at all of this, but I had to repress my feelings because I was just trying to stay afloat/keep my head above water.
I’m curious what other people tell themselves about the “Why Me?” question?
Thanks for listening/reading and hope you’re having good holiday (whatever your holiday happens to be!) season and that the New Year brings you hope, health, love & peace.
Paige