Diabetes and emotional trauma

Type 1 and LADA
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Hello all.

This is a difficult and heavy topic, that takes a lot of honesty. I can't say for certain that it is everyones truth, but I can say this is my truth:

the experience of type 1 diabetes- and possibly type 2, and all types inbetween- is emotionally and existentially traumatic.

"Where we really have to start looking is into the emotional state of the diabetic, particularly in regards to the emotional trauma of persistent fluctuating blood sugar, hormones and fear of what’s ahead. Bear in mind that insulin is a hormone and as such, we as diabetics do suffer a hormonal imbalance, which infects into every instant of our lives, from personal, private and professional."
-from Persona non Grata with Diabetes, by Paul Cathcart

This ties into this article I found through the Robert Wood Johnson Foundation:
"Building Resilience is Key to overcoming Childhood Trauma"
http://www.huffingtonpost.com/robert-ross/childhood-trauma_b_5440031.html?utm_hp_ref=tw

When we speak of better emotional health around diabetes management, we are speaking of emotional resilience.

We cannot be emotionally resilient about a thing which we aren't being honest is hurting us.

I say this because i didn't admit to the hurt for a quarter of a century.

We need so much love and support around us. Thats not weakness. Thats support. That is strength and integrity, and honesty to our vulnerability.

I would love to hear your thoughts and feelings about this. Your agreement and disagreement.

then I am curious to ask-- if you have gone through a similar experience as I have-- in taking a very long time to arrive to a healthy relationship to your disease--- my question is this:

what kind of resources do you wish would have been available as aid in forming a healthy relationship to your 'Betes?

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It’s pretty hard to live with diabetes. The subject is very difficult to discuss. We may all share the same unarticulated viewpoints. You are great to try to keep the conversation going. We tend to keep diabetes secret so it looms larger in our minds. I’m helped by trusted confidants who struggle too with insulin. I saw video of a camp where a closed loop cgm pump was tested. That as a yearly vacation would have helped.

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this is me talking about what I wish would be spoken of much more, what I wish would have been given support to my entire life, and what i am now bringing my art to.

I am working in bringing story and the perfuming arts into healthcare in order to provide what I wish would have been offered to me.

i want to know if others feel what I've felt, think what I've thought, and how differently the emotions and thoughts have played out in the lives of others.

this isn't a business solicitation. this is a story solicitation. and ugh, what a gross word. this isn't a solicitation at all. i feel violated just writing that word in regard to this. I'm sorry if you felt somehow violated by my post, or that you thought its posted with ill intent.

i will say this. Any action i take on behalf of the diabetes problem as a whole and my own diabetes- including being a part of this community- comes from a deep seed of pain that I am now transforming into a force of joy.

that seed is the source of this question.

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and, whether you answer here or not, I do hope you will think about it more :+)

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its hard because its so intangible, right?

no machine can measure it, no amount of data can quantify how diabetes err, effects life quality... rather, life experience.

i try to think of specific ways that the relationship plays out in my own life, between me and my 'betes, and it just doesn't fit into a linear progression, ever. haha

but thats also its beauty ? :+) it can't be fit into a box!

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ha! the perfuming arts lololol can't edit it now, but i do mean the PERFORMING arts.

to bring a fresh delicious scent of life into the healthcare system :D

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what kind of resources do you wish would have been available as aid in forming a healthy relationship to your 'Betes?

On the one hand, probably more understanding from others. There are a lot of inaccurate, judgmental generalizations out there.

On the other hand. the disease can be lived with and overcome, although it is a constant battle. With some diseases, the battle is not constant, but all too often, over quickly, and sadly. I am satisfied living at this time is history with this disease.

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Even though I've had some serious problems with my feet and legs over the past 7 years, I don't see my Type 2 diabetes as having a negative influence on my life. I dug in and read everything I could find, have experimented with diet learned a lot about my body. I look and feel a lot better now, even though I don't walk well. What I could have used in the beginning is even ONE professional person who had a clue what they were talking about.I'm sure they're there, but I didn't get to see them because my blood sugar was never high enough. Diabetes forced me to take charge of my own life. That was a good thing.

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I am satisfied living at this time is history with this disease.

1000% yes!! I am now grateful for my illness. It has taught me such deep life lessons.

Yet I felt I had to go alone through those lessons.... when we don't have to, right? :+)

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WOW, nothing like hitting on the head a dilemna that I've been facing for a long time. I was diagnosed 13 years ago, not totally out of the blue, but no bright horizons. I didn't do a thing for three years....,took meds, and that was that. Then for whatever the reason, and I don't know why, I started to pay attention. And although I am not the perfect diabetic, I work at it...until once in a very great while, I give up, and go off the boat. It takes longer to get back on each time, but at 61, how many times can I do this? I wish I could have had a coach, not necessarily a professional, but someone who would listen to my fears, my hates, my joys, and not scare me about the "what could happens". I need someone who knows something, more than I, about this disease and a person for which I can talk honestly about how I feel, not someone I have to impress with how good or bad I am doing. Probably NOT one of my best diabetic friends. I wish I would/could have a doc that knows more that me, not one I have to teach, one who isn't more afraid of diabetes than I am; or at the very least knows where to go for information that is correct, Those two things would be my hearts desire in walking this trip, I treat my diabetes with care, I take the meds, I exercise, I educate myself, I work on remembering that I am not the disease, it is something I have, but, it doesn't have me. But as I said, every once in a while, while being the so called "expert/perfect" diabetic, I jump off and just watch the horses go around I'm alone in this walk of doing it right,

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definitely! but it took getting through the struggle to get to the flourishing :+)

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or maybe rather, truly embracing the struggle

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I wish someone had handed me a link to TuD the day I was diagnosed: early 2007, T2 at age 57. A professional dancer for 3 decades. But several generations of diabetics on my dad's side and also pre-disposed due to the pre-eclampsia-caused still birth of my son in 1972.

I stormed out of my doc's office and proceeded to fill a couple bookshelves with every publication---scientific journal to memoir to practical guide---on the subject that I could find. Also googled lots of methods of suicide.

The idiotic guidelines I was given did nothing to give me control and I lived in that narrow arc that is defined by rage and despair for many months.

I still control without meds, but that gets harder and harder as my arthritis and fibromyalgia worsen with age, and now, 7 years in with tight control, I'm starting to develop standard complications, anyway.

The only positive thing I have to say about this scourge is that I found the DOC where I have made (and met in real time) many lifelong friends who "get it".

I did not need this scourge to teach me Life Lessons about living my life deeply. As an artist who lived an examined life for her art, those I knew.

TuD is an emotional home unlike any other. I would also credit The Behavioral Diabetes Institute. I stumbled on a Polonsky interview about diabetes and depression that resonated......Blessings on us all...Judith in Portland

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Speaking for myself, looking back to my own diagnosis 22 years ago, I got one of two reactions, neither of which were helpful:

1) Oh, diabetes! No big deal. At least it's not cancer!

2) BUT IF YOU DON'T EAT EXACTLY THIS WAY AND TAKE EXACTLY THE RIGHT ABOUT OF INSULIN FOR THE REST OF YOUR LIFE YOU WILL DIE AT AN EARLY AGE OF HORRIBLE COMPLICATIONS AND IT WILL BE ALL YOUR FAULT.

The conflict between them was, at least for me, traumatizing, yes. Feeling that burden all on the individual managing the disease while also feeling pressure to "keep up appearance" and make it seem like No Big Deal was exhausting, and contributed to loneliness for many, many years.

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Diabetes is a lethal, venomous snake we carry around with us just waiting for it to bite every single moment of every day. We must "respect" it, but we shall never be friends.

I cannot speak to such "trauma" as for me the when, the how's are of zero importance on any level. Nearly five decades, I have been taught "respect" in my own blood, my own tears.

I propose and advocate the health you suggest will come when counselors, specifically educated about diabetes teach us the cognitive techniques, the psychologic abilities to short circuit or burn out wholesale the dangerous thinking most of us acquire in time. Something which offers us faith in the treatments, hope in the fundamental approaches. I see "maintenance" of this disease but no cures on any level. Maintenance is not cure.

I dont care about the technology, the newest insulins, because the quality of our lives is not improved by them. Respectfully "maintained", is not remotely cure.

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I’m typing on my phone, so please forgive brevity. In Ginger Vieira’s newest book “Dealing with Diabetes burnout”, I wrote a piece on “resilience- the one diabetes tool we all should have”. I’m glad to see you bringing this up as without mental tools, all the physical tools are useless.

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Marina,

Sounds just like my experience! I'm 28, I was diagnosed at 13. I'm actually not sure exactly what the title is for what I have, but it is most like T1. When I was born (my younger sister as well), I had neonatal hyperinsulinism and they had to operate and reduce the size of my pancreas (I've been told by about 90%). As a kid I was totally healthy, but as I grew bigger, the little bit of pancreas I had couldn't keep up. My sister, who is 4 years younger than me, actually got diagnosed before I did. It isn't until really the last year or so that I have finally started to really own what I have and what it takes and how much it affects me, and also how much the diagnoses as a kid affected me. Prior, I think I just did the minimum to get by 'cause it was easier to not think about it. I'm actually heading back to school in the fall to start a masters program in social work with a concentration in healthcare. I am very interested in the connection between our physical and emotional/mental health and I am hopeful about the trend I see going that direction.

Thanks for sharing your thoughts on this and startign the discussion!

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I would agree, there are individuals with insulin dependence that suffer from varying amounts of emotional weakness, but I would disagree that it should be outright blamed on diabetes or that the A typical Diabetic should be excused from a happy productive, and fulfilling life. My life is not and will not be defined buy my complete dependence on insulin. Yes I think about my insulin dependence 24/7, along with my runny nose and a million other thoughts and problems, probably some of them not so healthy but I'm not consumed by my bad ones, we are humans, we solve problems.

I don't need any tools to help me form a healthy relationship with my 'Bete's...LOL it will never be a healthy relationship, it's a chronic condition that may shorten my life, I now have some other health issues at 60 that make my diabetes pale in comparison...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.

Is my life OK you tell me?

Great career.

Loving Wife

Two wonderful children 30+ years old

Three grandchildren

All of this happened after I was 100% insulin dependent...I guess I could have done better...but compared to many people I would say I'm blessed.

Marina we can choose to make our lives horrible, or with a tinny bit of faith we can thrive....

Life is tough...wear a helmet!

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I had my dad as a resource, because he was diagnosed at age 30..myself at 13. He didn't have to deal with diabetes as a teenager though, and there were very few practical resources available as substitute.

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I believe that almost all children and many adults who are diagnosed with diabetes should have as an option mental health support at least until it is determined to be unneeded. I met a Psychiatrist who is attached to an endocrinology practice at Indiana University Hospital who see adults when they are diagnosed and along the way when assistance is needed. They also have a child oriented therapy practice associated with the same office. The Psychiatrist related the she sees upward of 40 patients at a time and she said there is a large need.

I was diagnosed at 16 and was released from the hospital on my 17th birthday. I was amazingly depressed and stayed that way for the next 20-25 years, until I sought and got treatment. To set the scene my mom was a type 1 or LADA (there was nothing called LADA in those days)and mom had all the classic complications plus some.

For me having Diabetes was death. My goal was to immediately have a career, family and children and go as far and fast as I could. Health was not something I placed a high value on.

So I did that. I was married at 19 (now 37 years), We have two fine sons 32 and 35 and I had a wonderful career. What I didn't do was take care of myself. No need I felt that I was on a path toward early death.

Well I didn't die, and at 40 I had accomplished a nice career, a nice family and all of a sudden I was not seriously sick. I mean what happened. for 17 years now I have been in therapy off and on. Dealing with disease, guilt, loss of my mom (she was 48 when she passed) I mean heck it is tough.

Could a difference had been made if I seen a therapist when diagnosed? I do not knwo for sure. But it would have been worth a try, if a try had been contemplated. Such is life.

rick