Diabetes and emotional trauma

Type 1 and LADA
21

Mental health is the least focused on thing in diabetes care. It's rather shocking that a lot of medical professionals don't fully understand the mental toll of it. I'm currently struggling with anxiety and depression and a lot of it is related to being diabetic and managing it while having a normal life. I do see a psychologist now and am possibly going to get a psychiatrist as well (but I think I'd prefer not to use medications) . Sometimes it's hard for me to make it through the day because the negativity going on in my mind , then adding diabetes management to it makes it so hard. This is also a learning experience for my psychologist who hasn't seen many diabetics (she has a few diabetic patients though but probably only 2-3 other than me) who wants to help me as she learns about what diabetics can go through.

I do agree with Rick, everyone should have a mental health professional in their life if they get diagnosed with diabetes of any type. Even if they don't need it forever or all of the time, that should be something that everyone has. I wish I had a psychologist or even psychiatrist at the time of diagnosis, I feel like it would of made everything a lot better. There's a grieving process involved when you're diagnosed with diabetes , and it takes a lot to get through alone, and it shouldn't be done alone.

1 Like
22

I saw your post on the facebook group and followed your link here. I would love to start writing back and forth, if you're comfortable. I am able to talk about the things that happened to me back then without much fear of exposing myself to people anymore, and I'd be happy to tell you about my experience first if that would make you more comfortable. I endured a long, very abusive childhood and it still has a huge impact on my life now (if anything, it feels like more than ever so far in my adulthood). I struggle with diabetes and I have since diagnosis.

I recently came clean with my family about a long-standing eating disorder I lived with, and asked for help. My PTSD has become so severe with constant anxiety that I have felt that I am beyond coping. I wish that psychiatrists were more accessible, and I wish that my endocrinologist were more willing to address my mental and emotional health first. I feel like if I had that, the better control would follow. I definitely feel like my mental health is a detriment to my physical health. It's hard enough living with anxiety, let alone a chronic disease that worsens it, and is worsened by it.

23

I have been a Type 1 D for 32 years, in 2008 my 3 year old Nephew died from Strangulation of a mini blind cord. Twice that week my Family called 911 for my Low Blood Sugar episodes & by the time the paramedics came I was alert and testing my own Sugar. My normal Blood Sugar is balanced but with stress - especially the older I get my Sugar can drop fast.

24

Consumne Jane, how high was your blood sugar when you first starting looking for help? How high was it when you finally got it?

25

Judith in Portalnd,
you said "now, 7 years in with tight control, I'm starting to develop standard complications, anyway." i am in the very beginnings of all this and am trying to learn from others. what do you define as tight control? what kind of complications are you getting? thanks.

26

"..the seasons will change and our body is in decline for most of our life...don't stick your head in the sand, our time has a limit."

very powerful words.

27

my mother was a child survivor of the holocaust who also endured an abusive family life outside the camps. her step father would knock her head into a wall if she didn't make food to his specifications. i think it was from that that she never cooked. when we were little, she tried. but we ate a lot of junk. a lot of pb and j's. food was also a source of comfort. she never carb counted. she was a type 2 insulin dependent diabetic. with all that she went through in her life, and seeing how she dealt with cancer for years, she was/is still an inspiration to me. her depression was lifted by helping others as an ICU room nurse as well as hobbies. she said in europe when people got together they didn't talk about what their work was, just about their hobbies. she loved science, gardening, and architecture.

28

thank you for sharing this.

we are all heroes, in our own incredibly resilient ways...

: )

29

I’ve been a diabetic for 4 years and I lived a long time being emotionally shut down. There were other things going on (I was in my teen’s then) but looking back I saw that I was grieving the loss of my old life and didn’t know how to process my new one. I wish someone would have told be how hard it would have been emotionally and would have been there for me and my family when I would inevitably faced that emotional realty. I feel that there should be professionals available to help people, especially young people through the huge transition.

30

I spent 25 years being angry, scared, depressed, ashamed, heartbroken...you name it. I spent all those years rebelling against diabetes. It took all that time to come to grips and finally stop fighting it and start controlling it.

During my college years I majored in psychology. My goal was to become a counselor for diabetics, especially children. I wanted to be able to help them in a way I was never helped, with the emotional trauma and difficulties. Maybe I one day I will go back and finish my degree. Right now with all my health issues due to those years of neglect I can't concentrate on anything else but my health.

31

What I'd like to see is for healthcare providers come to the realization that not all diabetics are the same. Specifically, I want them to not treat all overweight folks with diabetes and high blood pressure as Type 2 without even testing for anti-bodies.

I was misdiagnosed 25 years ago, or so. I presented in the ER with DKA and a BG of 700 or so. (I did not know anything back then, so I just accepted what I was told). "You're fat, eat poorly and don't get enough exercise." Despite working in underground utility construction in Florida.

I'm also heavily insulin resistant, so of course they labeled me as a Type 2. A non-complaint Type 2 at that. This despite me stopping insulin on my 30th birthday, the day after doctors removed my appendix. I was taking 140 units/day the day before and Zero the day after. Everyone scratching their heads on that!

On-staff Endo even told me "You're not a diabetic, why in the world were you taking insulin?"

"Well it's obvious that you don't need insulin. You're just a gluttonous slob and need to take better care of yourself." While those exact words were never used, it was clearly the implication.

After a few years of being berated and humiliated, spurred by the natural tendency to withdraw from such verbal abuse, I stopped going to doctors, period.

Blood sugars remained acceptable for a few years...until they didn't anymore. Then again a few more years of humiliation until I found a doctor that was able to see beyond the stereotype and recognize the collective rectal-cranial inversion of the healthcare industry.

Once I found a good doctor, he says "Hey Brian, ever heard of LADA?" "You know something else, there's this concept called a 'honeymoon' did anyone ever talk to you about it? No of course not, they don't not apply to Type 2." "But then again, you're not a type 2 now are you?"

Years and years of being treated like a fat slob that could not control himself, 'forced' to take oral medication after oral medication, predictably, to no beneficial effect: it was finally over.

We finally figured out after all those years that my high blood pressure, high cholesterol, heart disease and most everything else was caused mostly by genetics, not lifestyle! The diabetes is an anomaly. No family history whatsoever. It's quite possible, however, that a mutated Human Leukocyte Antigen is the trigger. My sister was diagnosed with an extremely rare auto-immune disease (so rare in fact that it does not even have a proper name) about the same time and all three surviving siblings have tested positive for the HLA-B27 antigen.

So after years of thinking I was a failure, that being reinforced by healthcare practitioner after healthcare practitioner, I have finally come to develop a healthy relationship with my Type 1 Diabetes.

It certainly helps having a proper diagnosis and treatment!

Also, I have no doubt I would be dead if not for the unconditional love and support of my dear sweet wife of 32 years. a.k.a. my hemorrhoid! :-)

32

"collective rectal-cranial inversion of the healthcare industry."

Oh my; love this!

33

Hello MarinaTheBetes:

When keeping track damages or traumatizes us in any manner, in any way then it is another "lethal flaw" in the current approach of treatment.

We run the risk of making ourselves both helpless & victim(s) simultaneously if not obscenely careful of our labels surrounding it (e.g. I am leary to use such a laden term as "trauma" without careful consideration).

Diabetes is vicious, unrelenting and incessant. I cannot speak to external resources "I wish" existed. The critical necessity to build tools, techniques centered solely, exclusively upon emotionally thriving with this illness when things go badly is an approach horribly absent (whether then or now)... I fear

I will never befriend an illness which will kill us given every opportunity. I respect it, fear it, but we are never "friends"
34

I doubt that this is much different from what I have already read, but for my 2 cnets, here it is, I disavowed any connection with my "D" for three years, before I started to think more positively about doing something. That was 12 years ago, I've been diagnosed for 15. But in the last 6 years have taken this more seriously, and at times too seriously. But I agree, I have a dh and three friends with "D" and none of us are the same in how we treat, eat, medications, and exercise. My husband is the closest to my situation, we eat the same, take almost the same meds, but his BG's are always lower than mine. I've lost 80 lbs or more and he's lost nothing. He never exercises....Life is unfair to us. BUT the key is to find a doc, or medical pro who will not treat us the same as patient XYZ. I find myself teaching my PA about diabetes, cause she can't possibly know all about it. There are no endo's within 200 miles of me, so I can't get to see them. Right now I am sick of it. But more times I am a fighter, and this isn't going to win. I will do my best to win this battle. But it sure would be nice to have someone who "got" me and understood,

35

This is such a moving discussion. I just wanted to thank everyone for sharing their stories. I remember feeling so confused and alone before I found TuD, even though I had a concerned and supportive family---they were concerned that I was going off the deep end; while never failing in their love for me, they flailed around trying to figure out How to be supportive.....Blessings.....

36

Judith- yes. I was thinking and feeling the same thing.

thank you everyone, for giving your voice and sharing your deep, personal experiences...

its difficult to communicate our lived-experiences to those who don't share it, but there certainly are people who understand, who work to understand, who support nurture and care, and learn what it means to do that.

one's persons diabetes is one person's diabetes.

I opened up this thread a few months ago, because i was "burning" through my own layers of understanding and feeling, while doing a lot of research.

Here's a basic, but important, article that, if people haven't read it, is I think "fundamental PWD reading" :

The Emotional Side of Diabetes: 10 Things You Need to Know
by the Behavioral Diabetes Institute
http://behavioraldiabetesinstitute.org/print-preview/BDIFinal2ndEdi...

37

Stuart-
When keeping track damages or traumatizes us in any manner, in any way then it is another "lethal flaw" in the current approach of treatment.
Could you please explain this sentence? I'm not understanding your meaning.

We run the risk of making ourselves both helpless & victim(s) simultaneously if not obscenely careful of our labels surrounding it
thats a great point. I don't view myself, or anyone, as a victim. I think that mindset and relationship is incredible disempowering. We are certainly not at fault, but to view ourselves as victims is not giving credit to our worth and power.

(e.g. I am leary to use such a laden term as "trauma" without careful consideration).
I think this is a very good point worth exploring, the language we use around psychological care.
This of course goes into how we classify mental health, which invariably would touch on DSM V standards ((http://en.wikipedia.org/wiki/DSM-5_codes)) which has a lot of critics ((http://www.nhs.uk/news/2013/08august/pages/controversy-mental-healt...))

I would propose that ignoring and not voicing the emotional and psychological effects of diabetes, over many years, causes a traumatic emotional state.

Diabetes is vicious, unrelenting and incessant.
What i get from this statement is that you have a clear and articulate understanding of your relationship to your diabetes.

I cannot speak to external resources "I wish" existed. The critical necessity to build tools, techniques centered solely, exclusively upon emotionally thriving with this illness when things go badly is an approach horribly absent (whether then or now)... I fear
Oh certainly. There is no substitute for the technical and hard-medical side of care! that is part A of the necessary ground-level of diabetes care, part B being the emotional side.

I will never befriend an illness which will kill us given every opportunity. I respect it, fear it, but we are never "friends"
I think that your clear understanding for yourself of its nature is very, very good. Such clarity is all we can ask for.
And, that you respect it-- thats quite a statement.

and I agree. We Must respect it. we have no choice.

and that statement--- thats very emotional. How many years did you spend resisting diabetes? For me, it was 24. I would never have said a decade ago that I respect my diabetes. I wouldn't even understand that concept, and what it entails.

thank you so much for your comment. there's so much in it. thank you.

38

This is actually such an interesting topic.Once I have a bit more time (I'm procrastinating now already anyway :S) I'll read through all the responses.
I'm quite new at this (having diabetes) but I'll say while it did affect me, there were thing much harder to fight through in my life and is just another thing I'm adding to my list of life challenges.

39

I appreciate the stories and advice given in this thread. I am currently going through a decent bit of depression, it's good to know I'm not alone.

40

Wow... such a wide variety of answers, and yet, not everything is ever covered in such a discussion. My biggest complaint has been the emotional help for the issues you contend with and the complete and total LACK of understanding by the general health community, even an Endo, who professes to be a specialist in such diseases yet has absolutely no clue how to treat said issues.

Family, ALWAYS saying "oh, you just don't eat right.... Uhhh... excuse me? Just how do you know I am NOT eating right?" Trying, daily, for 39+ years to keep control. Sure, episodes of nearly complete lack of control due to the frustrations of never actually maintaining said control despite eating exactly the same foods at exactly the same times, exercising exactly the same amount every day for nearly 60 days straight... gawd how boring those meals were by that time... and still NOT being able to gain control? Finding out after 30+ years of insulin usage, that insulin, NOT the high sugar, is what has caused the most amount of damage to my body over the years? Insulin makes the blood vessels brittle, not sugar. Sugar can raise cholesterol, and THAT can contribute to even more damage caused by the now fragile blood vessels that are so brittle, they develop literal cracks along the interior of the vessels, causing them to hang onto the cholesterol, thus causing other blood flow issues etc.

The list of literal lies told by the health industry and the immediate response to issues being that I have deliberately caused those issues by doing things that I have NEVER done etc...

The biggest hurdle though is the constant mis-understanding and constant statements by folks that I caused this to myself... genetically induced immunodeficient disease, not caused by eating sugar or drinking soda, but inherited by blood. No persons fault, and most definitely NOT my fault, yet constantly told that it is? The emotional strain is horrendous. I no longer have a family that I can even communicate with as I have grown tired of apologizing for living with a disease that I did not cause nor can I properly control no matter what I do?

Sorry, I could go on and on, but emotional distress has to be the most difficult of the issues to deal with. My entire dreams for my life were wiped away. I had an appointment to the Air Force Academy... guaranteed college education and officer stripes... I had worked for years to get that appointment, had the printed and signed letter from congress in my hand... failed the blood test... Life wiped away. Ok fine. make new plans... had a low blood sugar reaction after working 72 hours in a 40 hour week, and was on the way home... found a tree in my lap and was wondering how the hell I had wound up in Virginia Beach hospital with no clue how I got there. Lost that job... 6 years of my life lost again... despite having done everything according to the so called book... except allowing for the stress of life and job forcing me to work so hard... finding that tree that I ended up having to purchase according to some law on the books in VA. Despite the fact that the tree lived and is STILL living to this day...

So... life, as it is, is hard enough. Diabetes, well, makes it that much harder. Attempting to face it and control it, and still having the side effects of taking the only drug (insulin) that I can use to stay alive. Family saying both directly and indirectly, that it is my fault.

Counseling? Never covered by insurance, and impossible to pay for when you can't even find work. Still, the counseling, needs to be better provided for. Not sure how to achieve that as generally folks are resistant to wishing for that sort of help. After all, we are all supposed to be better than that right? I mean, we are all supposed to be strong enough to handle whatever life throws at you right? As a teen, of course I was resistant to talking much about it, besides, all you get is platitudes. Platitudes from folks that also do NOT know exactly what they are talking about as 99.9% of them have only heard about diabetes and not directly lived with it themselves. Of those 99.9% that have heard about it, what they have heard is NOT the reality of the disease and of the possible 1% that might actually have a clue, it is unlikely that any specific individual with D will ever run across said person with understanding.

Shoot, sorry, there I go, feeling sorry for myself, and also in obvious need of counseling myself. Just stuck at this point in my 'life' if you can call it that, my life with diabetes. I know we all face life and the various calamities that life throws at us. The issue with Diabetes is that it never seems to stop throwing, and my catching ability has degraded over time. I fumble more and more now it seems. So so tired of it all. Nowhere to turn.