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Has anyone from your T1D health care team discussed diabetes distress with you? (Diabetes distress is an emotional response to the burdens of living with diabetes and the self-care necessary to manage diabetes.)
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I chose no, but have had depression and chronic conditions that are associated with depression dealt with before the diagnosis of T1B. (Epilepsy and hypothyroidism)
After driving 2hours to my endo, my 15 min appt is just filled with number inquiries and chatter.
Not really but if I have something going on he listens. Had problem this spring when I had Covid. He listened and changed my insulin doses so I could find what worked at that time. On MDI. Needed a lot of basal. But now back to normal
After 40 yrs you’d think that would all be settled, and mostly it is. But over that time I’ve had bouts with what I call “T1 Claustrophobia.” Mostly triggered by some major change in regimen. Switching from MDI to a pump, or changing pump brands, or going from a standard pump to an AID system, e.g. Suddenly the fact of T1 is all up in your grille for days and weeks on end as you try to get it dialed in, like getting dx’d all over again. Worst is when things are just not working and I can’t figure out why but I HAVE to figure it out and I’m just hyper-aware of being chained to this beast 24/7/365 with manacles that are never going to be unlocked. Yeah, that. But most of the time this is all just routine, part of daily life, and I don’t think about it very much.
no but always ask if I have any concerns or issues to discuss. I feel very conformable and would be able to say if I was experiencing this. I have in the past several times when other issues occur on top of diabetes. I take action if I feel I need to see a. mental health provider
I absolutely have diabetes distress related to insurance not covering supplies, high copays, and loss of coverage.
I said, “I am unsure.” I complete a questionnaire before each visit. Social welfare questions are part of the questionnaire. I don’t know if some of the questions that my APRN asks me are assessing my emotional distress. I don’t remember direct discussions about diabetes distress. She always starts the discussion with “How are you doing?”
My Doc suggested a PhD of physiology 20 years ago. I found a bunch of family stuff and my divorce was affecting how I was resenting my diabetes.
These days I just get tired of being bothered with caring for myself.
Eric, your last line resonated with me. But when I feel that way, i try to to remember to counter that with: It is good to care (feel compassion) for myself and all living beings, because we are part of the web of life and interdependent.
I put no but it’s because after the general subject was asked, I responded that I wasn’t having any issues. As such we moved on and I didn’t have to hear about it anyway.
I’m vigilant. My A1C and TIR are very good. My endo has confused vigilance with stress. I tell him it’s like having a two year old in the house. You’re always aware of it and do what you can to take care of it, but that doesn’t mean it’s driving you crazy.
There is pent y of stress in my life these days, but T1 is not on the list.
Over time (years) I’ve discussed many issues all related to the financial stress directly related to managing life with T1D. The majority of conversations have been with my CDE. Just before switching from my discontinued Animas Vibe pump to my current Tandem X2 pump, I did speak with my endo about my distress re. the need to empty my bank account to pay $900 out-of- pocket because of Medicare’s 5 yr. replacement rule. She didn’t have any suggestions then and has not mentioned the subject again.
Janis, here are some folks who WILL listen to your financial concerns and you can take action with them. Search for https://socialsecurityworks.org and https:://pnhp.org and https:seniorsecurityalliance.org.
My Dietetic specialist hasn’t discuss anything with me
I said ‘no’ but I am asked – it just never seems like he really wants to know. I did say I was experiencing some burnout and maybe a therapist would help – did he have ant recommendations? No he didn’t and it was dropped. It comes and goes and I manage but after 47 years there are always days/weeks that are hard. Ideally I would love to find a therapist for those with chronic diseases. So far no luck.
While the pity palace is vastly overrated as a permanent place of residence. It is also true as Mark Twain once said, “Wagner’s music is better than it sounds.”
The optimists continue asserting that folks are ultimately in control of events. But we know it to be false.
Always the proverbial Dewey Decimal Kool-Aid for T1D—sounds great until you actually do it.
And trying to explain an unexplainable world to the people who actually live in it is tough. So maybe, assuming a sufficient degree of empirical rigor, a health care person counseling, advising, or maybe even just listening would do some good. ✌️✌️✌️ 😉🙃🙂
Both my Endo And GP always ask me if I have any questions.
My last endo hinted at it, but I’ve never felt Diabetes distress. 49 years in.
I don’t recall my diabetes care providers ever specifically asking about diabetes distress or my mental health. I’m lucky to be doing ok emotionally, despite T1D being a perpetual pain in my pancre-ass. (Word play, one of my coping mechanisms 😉). I have known others though not as easily distracted by pounds so could really use some help in this area but may be unfortunate asking. I do think it would be helpful to have a brief questionnaire before each clinic visit that ask a couple pointed multiple choice questions about this and have local resources to recommend.
This article includes some helpful tips find a diabetes knowledge therapist…
https://diatribe.org/how-find-right-therapist-when-you-have-diabetes
TYPO, meant: I have known others not as easily distracted by PUNS who could really use some help in this area but may be UNCOMFORTABLE asking.
Discussion was as to whether I was distressed and ended when I said no.
I have had a pediatrician send me to therapy because my blood tests were not to her liking. I have had lectures on what I was doing to my body, but when I asked for solutions they stare blankly and tell me to check more and keep my sugar tests at a normal level. My endocrinologist now is now offering explanations and solutions to the problems and less stress or problems. I do get burnout. I just went through a power outage that lasted about a week, family wanting to grab fast food every night, and no way to charge anything. Lots of nights sitting in my car. lol Pain in my behind, yes, love help, yes, need mental help, no, my anxiety and antidepressants are doing their job. 🙂
No, I’ve never had anyone ask me about it. It is a real thing for me though. Fortunately, I’ve been self-educated about it and have sought help on my own.
I said no, but when I was diagnosed (42 years ago) my endo told me that I needed antidepressants so that my moods would even out and cause better sugar results. I don’t think he had a firm grip. Luckily my mom did not believe him! He also told me I’d likely not live past my teenage years. I often wonder how much of my diabetic anxiety (fear of complications) “distress” is based on the fears that endo ground into my head when I was a kid.
Only had an experience with depression in 1987, 17 years after onset. My T1D was not in control, and was told if you get it back under control, the depression would go away. I did, and it did- go away.
I brought it up to my T1D team before they discussed it. After 56 years of this disease, distress is just water under the bridge. Electronics have made it MUCH worse now with constant alarms, alerts, set/CGM change reminders, transmitter expiration, etc. I would never go without a CGM unless I was forced to do so. Realtime BGs are a blessing (and a curse).
How long is “discuss”? They used the words but the so called “discussion” lasted less than five (5) minutes. They raised the subject and promptly ignored the necessary conversation beyond that ~front door~. A serious pity….
I sometimes feel ambivalent about antidepressants. Some of us need them, some do not. Doesn’t it depend on differing genetics, differing epigenetics, differing ancestral traumas that are passed on verbally generation to generation (or kept secret like incest or adoption or infidelity)?