Maintenance Education for Chronic Illness

General
1

Okay, folks, I have a question for you.  Something I have been thinking a lot about lately is how depression in juvenile diabetics might have something to do with education about treatment of type I.  For instance my doctors did a great job educating me, as a child, about how to take care of myself, but no on has ever mentioned any psychological issues concerning being a long-term diabetic.  I don't really suffer from depression, but I sometimes get down; I have the impression that diabetes education has not really prepared a chapter on "So you've been diabetic for over 20 years.  Now you're depressed."

 

What experiences do you all have with your education programs including an emotional well-being chapter?

2

Ana,

My docs have all been bright and quick to answer specific questions but I can't even get them to refer me out to a diabetic educator or a nutritionist.  I am not sure anyone has really looked at the challenges of maintaining this disease over time and how to best enable the patients.  Diabetes care, technology, available insulin types, knowledge, research are all much different topics than they were when I was diagnosed and I try to read and keep up but I would love to do the "new diabetic" training every now and again just to keep myself fresh. 

Regarding emotional issues, my docs (with one exception), have not ever been interested in asking about or dealing with it as far as I can tell.  I take my own breaks, buy a little space from D management and have down days when I need them but I've not seen any formal advice that I could either take or ignore.  It would be interesting to see if anyone out there has a running program that addresses this.

Cheers!

A-D

 

3

I have never found anyone to help withthis one. I can't complain about my doctors, diabetes nurse educator but trying to find afordable and specific "talk therapy" help has always come up dry, and I live near NYC. Nno lack of specialists there.

4

I know how you feel and I dont really know how to cope with the emotional side of it either. Im also scared to tell anyone about it because they might want me to go to a therapist. I dont know what to do.

5

The site moderator, Gina, said that she had found someone to talk to about it. I'd ask her about her experience with it. Have you ever asked your endo if they could refer you to someone? I think it should be in endo's training to ask their patients about these matters, and also know who to refer them to.

6

Eloise,

 

I am going to offer some information from someone who can look backward at a lot of the things you have ahead of you.  The word therapist may have some ugly connotations for you (oh- c’mon- keep reading, eh?), however, a therapist is just a consultant.  They are consultants who have experience finding solutions to problems and helping people to succeed and because they aren’t in the middle of the problems they often have a clearer view. 

 

A lot of years ago, someone made an interesting observation about my reluctance to get help.  He asked me if I would ever consider building my own home.  I said I might.  He pointed out that, while I may be able to get the plans, get the tools and supplies and complete the job myself, it would likely take me a long time and be a far more painful process than bringing in specialists to help me complete the task.

 

Getting help doesn’t mean you can’t do something.  It does mean you don’t want to discover every mistake you could have made along the way.  It also means that you want to find your way or find your answers more quickly.   One thing that takes time and mistakes is finding resources you can trust.  Trust your judgment.  If you feel like the person you have picked to assist you is not providing the assistance you need, you will need to go through the pain of finding someone else and that goes for every contractor you will hire in your life. 

 

Learning to pick good people and hire good help are important skills to develop as you work your way toward adulthood.  It is a real challenge to balance when you are strongly independent by nature but they are skills worth honing!

 

Oh my – look at me ramble on – Probably more than you wanted to read and an opinion that won’t sit too well t’ boot from some ol’ fogie you’re sure can’t possibly understand, LOL 

 

Okay well you got my full 2 ½ cents… Whatever you decide and how ever you decide to handle your burdens, you do have plenty of good company in places like this one!

 

Good luck and I you will continue to share the things you do and what things work for you as you find your answers!

 

Cheers,

The somewhat-old and meddlesome, A-D

7

Honestly in terms of diabetes I heard the word therapist ("Maybe we should have sent you to a therapist when you were younger" ya they actualyl said that) from my parents before I heard it from any medical person. I've been diabetic since 1994 and I don't think it was even something that was considered until 2006. And honestly that could explain a lot. My endo vaguely brought up the idea of me seeing a behavioral psychologist over this past summer when i was having trouble doing site changes (I got no deliveries on almost every change for 3 months straight and it was taking me about an hour to do the site change. i ended up switching from the soft set to the silhouette and it solved all of those issues) but I never ended up going. Maybe it's just me but I was diagnosed when I was only 5 and now that I have worked with newly diagnosed kids at camps and as a babysitter and seen it from the other side it is incredible the kind of rituals and defense mechanisms that kids are forced to build to be able to deal with it. These kids end up shutting down emotionally in a certain respect as a survival skill. And then it ends up perpetuating itself because you grow up being know as the "strong" kid so no one ever expects you to have weak moments and then you feel an obligation to be strong all the time. and now i'm rambling a little. Well this is just my take. any one else experienced this?

8

Marlee,

Your insights are disturbingly close to what I remember of myself throughout my teens (and quite likely some of my early twenties)... I think my receiving the advice that I stop thinking of blood sugars in terms of wins and losses and more in terms of correctible data was the where I began to make some of my most positive changes.  As a (mildly competitive –okay see fanatically competitive) younger guy, I felt horrible at every misstep in blood-sugar-land and either hid highs and lows or didn’t test at all.  That did NOT work out well for me.  But I kept my image intact, LOL – now, I am no longer diabetes' walking tribute to the Pink Panther.  I make many mistakes a day and my goal is to catch them fast.  I have found that keeping my D between the lines is done by keeping a keen eye on the bumpers and testing often and correcting as needed…  Hmmm – I am reading back through what I’ve written and I’m not sure if any of it makes sense… but – I’m equally unsure how to fix it and I still want to post it so… here it is folks… LOL

Cheers!

A-D

 

9

I know a 21 yr old young man who has been D for many years. His brother was also a D and died at a young age due to a hot tub incident and D.

With that said, this young man did a talk at a Diabetes Research Update I went to recently and he said "I see a shrink". I was a bit flabergasted he was so open to saying he saw someone, but then thought how strong he is for saying this to an audience of people.

He went on to say he sees an actual Psychiatrist because they are both counselor and medical doctor and his shrink can not only help him through his emotions but also understand the unnderlying physiology of the illness. He sees his Doc every couple of months to keep himself, as he said "grounded".

I thought it was a splendid idea and made my son an appointment. Now if I can get Mr. Stubborn 13 yr old to actually GO to the appt., that 's a battle well fought.

I wish I was closer to Denver though, as the Barbara Davis Center For Diabetes has an entire team of people and a counselor is part of your routine check-ups.

 

 

 

10

Marlee,

 

I have to agree with you and A-D here--the way you describe as being "the tough kid," really sums up how I was raised. As a child, I'd always here my mom tell people, "Ana never cries, so I know her blood sugars out of whack when I see her crying." Now, yes, I was mostly a happy kid, but that also made me think, "I'm not allowed to cry because that means there's something wrong with me."  So, in front of my family, I _never_ cry. In addition, I learned how to really hide my emotions, and hide my highs and lows (like A-D describes). It became life-threatening when I was in college.  I would pass out before I'd tell people that my blood sugar was low.

 

But the way you describe the emotional closing-off seems dead-on.

 

Best,
AK

11

I'm so glad to hear people talking about this!!

I've always said that they should include a counselor/therapist in the team of doctors that attend to diabetic patients (especially type one).  Just typing that sentence seems very monotonous to me because I've written several papers while in college attemtping to argue the point.  I'm a psychology major and up until this semester my intention was to become a diabetic counselor. 

I think having a doctor there to tell you what you did wrong and what you need to do right is NOT ENOUGH.  Obviously people that are having a hard time managing their diabetes might have some underlying problems with priorities, attitudes, etc, that need to be addressed in an open and positive environment.  I don't think anyone would say that they wouldn't benefit even in the slightest way from having somewhere there to talk to every once in a while about diabetes.  This is a chronic disease that requires constant daily attention, i know we can all agree - that gets draining sometimes!  From a personal standpoint, sometimes i just cant make it the priority, you know?  Sometimes i think that it is really unfair that we never get a break.

I said "up until this semester" when talking about my career goals, because unfortunately with the economy the way it is and with healthcare in a weird, unsecure zone, i don't want to take the risk of trying to start my life in that shaky career path.  It is something that i would love to do, however i do need to make sure i can pay those insurance bills haha (we all know that insulin isn't cheap!)

I'm still keeping an open mind to what I'm going to do, because it would be great to try to take a step forward in that area of providing mental health care to diabetics.  This semester in fact I interned at a hospital by my school working with their diabetes services team.  I did inpatient education as well as some in/outpatient consults.  It was a great opportunity to try to provide some help to new diabetics or experienced diabetics who had problems.  They were mostly adults with type two, however i could still help them with a lot of similar issues and i was able to provide them with my 7 years of experience/knowledge.

Its great to hear more people talking about this because i think it is a vital issue.  If we only could remove some of the social stigma from therapy, i think it would help a lot of people out.  And by spending some more time building a solid foundation of acceptance and understanding in diabetics management in the beginning, we can save the pain, trouble, and detrimental health problems that come with non-compliance or other problems with self-care later in life.

 

Talk to you later,

- Ryan

 

 

12

My daughter who is 17 has a great team of doctors. We live in the Kansas City, Mo area and have been going to Childrens Mercy for 11 years now. If anyone needs information let me know because they have been able to guide us in everything from her diabetes education to her depresion and coping with it etc...

13

Ryan--in response to your information--I think you're exactly right. What I find to be the biggest danger, both in my own research, as well as in my own experience--this will be a surprise, so brace yourself: ADOLESCENTS ARE UNSTABLE! And, oh, man, a type I diabetic has a vasty supply of insulin--and insulin can be used to commit suicide by the unruly teenager. That alone should be motivation for doctors to encourage therapy to their patients.

14

I'm about to be very straight, and while I would like to ask for people to not be judgemental, I am probably going to hear it anyway. So here goes: I can testify through personal experience about the utter necessity of type 1 specialists. I went to a psychiatrist who prescribed me massive amounts of medication that I didn't need. The side effects on some of the meds were horrible because they caused insulin resistence. It was...bad. The more out of whack my blood sugars went, the more "depressed" I became. She (this doc) should have known better. It was her duty to know better than she did. It was also mine to find out exactly what the heck I was getting into, but pharmaceutical companies do NOT make information about medicines that are designed solely for the purpose of adjusting, for instance, serotonin plus norepinephrin levels easily available.

I am opposed to the idea of medication only for myself although not averse to it as an option (I'm not a christian scientist) if it should come to that. My road was not pleasant. I would have liked to have had the chance to adjust my routine without having put my faith and trust in a person whose motives to me now, after several years have gone by, are extremely questionable. And I am not, currently, on medication, having stopped it (NOTE: this is DUMB, and I DO NOT recommend that AT ALL) on my...own (shudder) almost a year ago. Medicine is a miraculous thing, but do not ever consider going off of it without assistance. Why, if the drug is so miraculous, must there be a series of walls related to what, exactly, was going to happen when I got off of it...discontinuation syndrome, my...eh...I won't complete that phrase.

Ryan...I am beseeching the gods that the day will come when you find circumstances availing you to pursue your original course in the helping field as a diabetes-related specialist. I am unashamed to report that I saw a cognitive behavioral person whose specialty was diabetes for a few years...unfortunately, I hate to say this, but I think it would be a very beneficial person who had both the training and the inside experience (as a type 1) because there comes a moment when all the compassion and sympathy in the world just doesn't seem to cut it if you haven't been there. I apologize if anyone is offended by that statement. I would like to some day find that statement to be unjustifiable. So far, nope.

15

I don't understand why, with all the technological advances, and all the vocalization concerning diabetes and depression more is not done.  I have asked my endo, who opened a large diabetes center a few years ago, and was told that nothing was really available for me.  It makes me SO ANGRY that I have been screaming for help for years, and I no one is really willing to help.

To start at the beginning, when I was young, I used to lie about my blood sugars.  All my doctor and my parents wanted was for me to have good blood sugars.  My doctor yelled at me if they were bad.  So I would make them up, or adjust them so that they were pretty good.  They were then completely incongruous with my A1C, but no one really said anything about that.  My parents would tell me how proud they were that I was taking care of myself and doing something that was so difficult.  But the truth is, all I wanted to do was get really sick so I could go to the hospital and have someone else take care of me for a while.

I remember a time once when I saw the book "Diabetes for dummies" and I opened to a page that talked about diabetes and depression.  I showed the page to my mom and she looked at it, said "mmhhmm" and kept walking.  I was devastated.  When I would cry or get upset, I was told that I should be happy I didn't have cancer.  I wasn't really allowed to feel sorry for myself, and no one seemed to care if I struggled or not.

Don't get me wrong, my parents loved me and wanted what was best, they just had no idea what was really happening, and I, being stubborn, refused to tell them.

I've gotten a little better since then.  I know that my health is more important than a couple numbers.  I am on antidepressants, and they help.  Some.  However, in my area, there are no support groups, no one that specializes in they psychological side of diabetes.  I only have an endo that is forever trying to get my numbers down, and a diabetes nurse who tells me how to use my pump (which I already know).  I'm trying to live my life, but am having difficulty because I can't seem to get control of the beast of diabetes.

Ryan, I too hope you are able to obtain your goals.  While Type 1 diabetics are the minority, we are still people and we have the right to receive proper care.

16

Ana,

I have to post an update because I have a new endo (who clearly is still trying to figure out what to make of me) – and she agreed to send me to a CDE and nutritionist.  Given my previous endo’s response of laughing at me when I asked… I feel like it is a real step forward!  I dropped off the paperwork for the CGM and I figure I’ll call next Monday to see if she’s going to fax it or if I need to go get it and kick the process off on my own… 

Crochet Nut,

I’m going to be very judgemental here for a moment… in my judgment, I think you are an absolutely ADORABLE, WONDERFUL, FANTASTIC, OUTSPOKEN, THOUGHTFUL, TENDER, DEAR woman and I am grateful every time I see you have added another post! J

smartysb1,

I envy your ability to communicate.  Your post is beautiful and I hear ya’ loud and clear.  The thing that is helpful to me, reading posts like yours, is that they echo bits and pieces of me and my past, and parts of my thoughts and emotional standing that I haven’t always taken the time to explore.  I am grateful for your sharing so openly and honestly and with such detail!

Ryan,

I’m sorry but after reviewing the comments here on the site, we’re not going to be able to allow you to change majors/career paths.  It seems there are enough of us… frankly, I think we can take you!  Whatever your choices, it’s great to have you aboard!

Okay…

I think I’m done with my thoughts for a moment…

Cheers!

A-D

 

17

Ryan, let me add my two cents' worth to A-D's post. Please don't change career paths. I think you'd make a great diabetes counselor and/or psychiatrist; don't forget: when economies tank, people flee to school. 

 

A-D, can I start seeing your doctor? No, no, I should say here that my doc really _is_ great, and if I need a dietician or a counselor, I know I could ask him, and he would recommend people; I just think there is a trend in the medical community of ignoring things, but you've read my essay, so you know what I mean!

 

18

Although it'd be wonderful to find a therapist who had experience with Type 1 diabetes, or even diabetes in general, just having a good therapist that you "click" with can be so helpful.

The thing is, human nature is human nature. Whether we're dealing with numerous shots a day, or the fear of complications in the future, or complications now, or what have you, the coping mechanisms people develop are pretty similar... A good therapist should be able to help whether the person they're counseling has diabetes, or cancer, or major depression, etc., because at the heart of it, it's less about the actual malady and more about how we react to it.

19

Keely,

There are a lot of ways I agree with you but a non-D therapist reduces the ability to speak in short-hand and to communicate as easily. Diabetes invades every area of our lives.  If I was going to tell you about a business meeting I had that was stressful and I said:

So I showed up a few minutes late, and as I was walking in, I was getting fuzzy headed from my sugar dropping.  It really cranked up the pressure and the stress...

You get it... I'm betting you get it...

To say that same thing to a non-diabetic audience, I can say:

So I showed up a few minutes late to the meeting.  I've told you a bit about low blood sugars, right? Yeah, so my sugar was a bit low and it can really amplify the feelings of anxiety.  Also, I know I'm not thinking as quickly or clearly as I need to so that brings the pressure up.  So there I am, walking in late and it felt like the room was landing on me...

Both work - but for those of us who really have to work to discuss our emotions, sometimes it's nice if we don't have to think so very much and work quite so hard.  Help is wonderful.  Sometimes, it is easier when the person you’re speaking to has traveled the same path, is all.

Anyhow… I reserve the right to be wrong and make no sense, whatever (clearly, I do not have exclusive rights to these things – but I’m working on it ;) )

Cheers!

A-D

20

Oh no, I absolutely agree A-D! :-) Somebody who's had to personally deal with diabetes would definitely be preferable to someone who hasn't. I'm just thinking that, if the choice is between no therapist and a good therapist who doesn't have the personal experience, the good therapist can still be a lot of help.

(Now, on the other hand, if the choice is between no therapist and a bad one, my money's on none!)