Type 1 Diabetes and Mental Illness

Hey! I was diagnosed with Type 1 Diabetes on September 11, 2000. For a long time this was my only medical diagnosis until 2014. In 2014 I was diagnosed with Post Traumatic Stress Disorder, EDNOS, Major Depression, and anxiety. I was pretty confused to learn I have multiple mental illnesses, but I was also happy because now I knew why I was so different from everyone else, I started to feel normal again. I hope to one day become a social worker for diabetics and children with mental illnesses.

Greetings. I was diagnosed with Anxiety in 2006 at 15 and later diagnosed with Type 1 diabeetus in 2013. I managed it for all of half a year and after several bouts of DKA, I have it moderately but still insufficiently managed. In the development and adjustment to living with said diabetes, I have had my anxiety flair up to extreme levels it hadn’t been at since 2007. I have been dealing with suicidal thoughts as well as the other symptoms associated with anxiety. I hope this little group here might be a good place to talk about how that makes us feel

I am seeing a psychiatrist and a new doctor this week in hopes of getting everything back under my control and feel sufficiently unsuicidal enough to hopefully not alarm anyone who reads this.

Hi. I am T1D and bipolar, but the bipolar comes from my mom. I am pretty well managed except under extremely stressful conditions. The problem there is that just having glucose levels out of whack adds physical stress to the body, so it complicates the mental illness. I erupt like a rocket if I am disturbed when in that state. I managed to make it to retirement, but not without losing some jobs along the way. Mental illness is still poorly received in parts of society, and not well understood by non-professionals.

A doctor worked in my doctor’s practice who treated diabetics and mental illness. It has been learned that diabetics frequently suffer from mental illness. Probably has to do with the chronic stress of having a lifelong disease.

Hi I too have T1D plus I’m bipolar, suffer from severe depression and before I was diagnosed with bi polar and depression I thought I was going “Mad” it seemed like I couldn’t control my reactions to situations around me and I had no interest in keeping up with many of my friends and family members. I am now pretty well controlled although I still have times that I just seem to explode and many times its just about something that gets under my skin enough to disrupt my normal routine. This is hard because I work in a call center taking calls from banking clients. As with the others if sugars are unstable then emotions are harder to keep within an acceptable social interactions. Some days I’m so tired of the constant fight of battling the T1D, the depression and bi polar it really does take so much out of me. And yes I’m one of us that has had thryoid problems but I had my full thryoid removed due to cancer and my thryoid levels are great. Now a days I’m taking pre start to make it through the long days. Now many may say it’s my diet, exercise. But I do eat very healthy and pretty clean and well exrecuse I haven’t really worked out in many months because of extremely low energy and that has changed in the last 9 months. I’ve been told from my medical team it can be fighting so many chronic battles on a on going basis but I just want enervy again.

Hello all. I am new to this group and I hope I might be able to connect with someone who understands what I’m going through. I was diagnosed with type 1 at age 8. Then at age 20 was diagnosed with depression. From then to my current 33 year old self I am diabetic, have depression, anxiety, ADD, and hypothyroidism. I am on three different antidepressants and I continue to struggle with having a good day where I don’t cry or feel like killing myself. I do have good days and have even had good months. I am having a low time and feel as if I have no friends because I sit at home daily and wish I had someone besides my husband to take me away from my thoughts. Has anyone experienced this and how do you cope?

Like so many of you, I also suffer with mental illness. My depression has been an ongoing battle for some 40 years now. I think I became depressed just a few years after diagnosis with type 1 at age 10. I also have anxiety with blood sugar readings. How can we NOT struggle when we are told by most medical persons that our A1c must be at a certain level (or be categorized as “not well controlled”)? I remember hearing the word “compliant” (or “noncompliant”) for a number of years with regard to type 1 diabetes. I hate that terminology and feel it has no place in medicine, period. If folks had any idea of the struggle of those who take insulin and have to monitor blood glucose frequently, they would see the difficulty of this disease firsthand. Never easy to walk a mile in another’s shoes.

I have had T1 for 23 years now and hypothyroidism for about 14. I have recently been diagnosed with ptsd and depression. I was having a lot of anxiety, but was told because of ptsd. I have been on med for anxiety and depression for 6 months. It helps. It isn’t the fix all, but it does get me to therapy, out for walks, and mellow. I did have this common misconception that it would make me “happy.” It just makes life not so overwhelming for me. Don’t get me wrong, I still have off days where I cry, isolate, and do absolutely nothing. I’m learning not to beat myself up over it. I do tend to cry a lot with lows, so I try and rule that out. The other thing is unregulated thyroid hormone can make you feel crummy and depressed. I would say have that checked, but it is crazy because most doctors can’t agree on what “normal range” is. Do you feel comfortable with group therapy?

I have been trying to find a group but have been unsuccessful. I have been going to a therapist for 13 years but I really would like to have a group of friends that understand.

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Hey everyone, I stumbled upon this while looking for people who understand what I’m going through. I’ve been diabetic for 12 years and in the last two have been diagnosed with severe depression and anxiety along with 8 years of ptsd. The combination of everything has led to poor care of my diabetes and health. I always felt bad talking about it and tend to just completely shut down. I’m looking to make a change and make some friends, who are maybe going through the same stuff, along the way. And to also help them in return. Just gotta remember we’re not as alone as we feel.

I’ve had type one for 11 years…and I’ve had a rough time for what seems forever. I started doing good for 5years then life happened and now I seem to be in a “burnout” …I just can’t seem to have enough energy or motivation to do anything to better my diabetes. I understand completely the feeling of guilt and shame about it…I’d be more than happy to speak about it with you since I don’t really know of other people who can relate either.

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I was diagnosed at 12 and basically from that point on my mental health has been in a steady decline. I refused to really even accept that I was diabetic until a few years ago, barely remembering to take insulin and almost never taking my blood sugar. I only really accepted it after moving in with my partner and realizing I didn’t want him to wake up next to a corpse.

I started taking anxiety medication at 19 and seeing a therapist at 23 (I’m nearly 27). My diagnosis has gone from anxiety to ADHD to bipolar disorder, and now my therapist is wondering if it might be PMDD. My numbers have been the best they’ve been since I was in the honeymoon stage right after I was diagnosed, but the stress of taking care of myself really weighs on me. I have about two appointments with some doctor or another every week, and I’m constantly on the phone with pharmacies, doctors, and insurance. I hit my out of pocket max a few months ago, but before that I was spending, on average, $300 a month on medicine AFTER the $300 taken out of my paycheck for health insurance.

I love my therapist, but every time I bring up my medical issues she responds with, “Everyone has medical issues.” Which I guess is true, everybody needs to get checkups and see dentists and optometrists, but not nearly at the volume a Type 1 does. And if they don’t feel like it, they can skip appointments however long they want with nearly no issue. I don’t have anybody in my life who really understands, and it gets horrifically lonely.

I also wrestle with a lot of guilt and shame, which is exacerbated by nearly every doctor not my endo dismissing any medical issue I have as “because my blood sugars should be better controlled.” I’ve heard that excuse from everybody from gynecologists to optometrists, and I’m really starting to get paranoid that, instead of finding out what’s actually wrong, they see “type 1” on my charts and find it an easy, lazy excuse to point to.

Sorry this is just a big long rant, but I’m desperate for people who understand. My endo, nurse, and nutritionist are all so great, understanding, and supportive, but none of them actually have Type 1. And my endo’s currently on maternity leave and her replacement has absolutely no bedside manner. If anyone has any advice on dealing with the day to day of being a Type 1 (not being a parent/caretaker of someone with Type 1 or having a different chronic illness or having Type 2), please let me know. The loneliness is killing me.

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Hey, Samantha, and welcome to TypeOneNation. I hear you about wanting a reply from someone who is living it, so I’m just posting to let you know this Forum has lots of wonderful human beings with T1D on it who can relate, so someone who fits the bill is sure to reply. In the meantime, I’m sorry for the diagnosis that binds us all together, but I’m glad you found us. You are NOT alone.

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hi @samihunter95 welcome to the forum,

… just a few thoughts here, it’s ok to have to change therapists, it is not easy to find one that understands your perspective, and doesn’t go too hard or too easy on you.

diabetes stress and burnout are really common at the 15 ish year mark. if I can give you one thing I had to work really hard for, is that NO ONE has perfect control. I sure as heck do not have perfect control and I’ve been doing this for about 42 years now. It was helpful for me to not look at a blood sugar as a judgement - first because it is not a judgement - but second because I was the one having feelings that a 370 “should not happen” and my second hypo at night “meant I was stupid”… and it’s just not true… a bs is a bs it’s a number. if it’s low you do then next right thing… if it’s high you do the next right thing AND THATS IT. please believe me that the guilt of a off number is optional.

yea it’s stressful, but you are working hard and in time that hard work will be “routine” and the magnitude of the hard work will not be such an issue… if i could give you my #2 issue, it’s that every single person in this world has some kind of “boat anchor” they have to lug behind them, pissing them off because it is such a burden. just know it and that some people don’t show how much stress they are under… especially on social media or in public… but it’s there. the point is “if it ain’t one thing it’s another” and I actually injure myself when I think about comparing my boat anchor to someone else’s boat anchor.

I hope you find some peace, and I am glad you are here. keep talking about it!

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Thank you, sorry again for the rant.

Do you know of any ways to help that diabetic burnout? Have mental health medications helped or any coping mechanisms?

Never mind a good rant. Plus as far as I can see nothings broken around here so you’re good. I didn’t need medication but it took a lot of work in therapy. My focus was self esteem, forgiveness, a searching and fearless moral inventory, a commitment to honesty, and to working with my therapist as well as another person in a similar situation.

If you do need medication then you do. My wife, for example, got a lot of relief from non-serotonin type anti depressant which was what she needed.

I would recommend a therapist (if you can find one) with some experience with PTSD, or chronic disease. :shamrock::peace_symbol:

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Hi @samihunter95 and welcome to the forum. First of all I commend you on all the hard work you’ve doing that has resulted in good numbers. Hopefully as that continues those doctor visits will space out and won’t be so frequent. Unfortunately most doctors - even some endo’s - don’t really understand Type1 and blame it for a lot. Some things may be due to poor control but things do happen independent of diabetes. That said, I too have had doctors tell me my numbers could be or were behind certain things: for a while I had frequent headaches - those turned out to come from grinding my teeth, not my numbers; on the other hand I got frequent yeast infections in high school and college. Home BG meters didn’t come on the scene until about the time I finished college (I was diagnosed in 1963) and who knows what my blood sugars were, but my urine (yes, you read right) probably showed sugar in it more often than not. With actual blood testing and the ability to better care for myself knowing what those numbers were, I stopped having them almost completely, and it’s now been years since I’ve had one (thank God!). So while I agree it’s not right for your doctors to blame everything on your diabetes - particularly since you’re doing better now​:tada::tada: - our body systems are interconnected so the care we put into each area helps the others. Sometimes you have so be assertive and tell a doctor that they need to keep checking. You’re doing your part with your numbers and want to exclude anything else that may be causing the issue. They have a responsibility to be thorough.
Some people are assertive, others are not. Asserting myself is something I learned over time (I used to be a doormouse/doormat but thankfully outgrew that). If you’re not confortable standing up for yourself take your partner with you to help. Sometimes having someone help you out or speak for you when necessary, makes all the difference in the world.

Regarding your insurance - if you use a pump or CGM your device rep might be able to help. When I first started (pumping in the mid 90s and CGM several years later) me reps recommended suppliers to work with (and let me know ones that weren’t so great) and they did the initial work of submitting my paperwork, records, and my insurance info so my coverage could be determined and the supplier could let me know what my out of pocket was. Some supplies now fall under pharmacy benefits rather than medical and that’s something they can help determine depending on your plan. I’ve hit the occasional issue at my pharmacy - it’s rare but sometimes I find I’m suddenly being charged more than I should be. I’ve gotten on the phone with my insurance and found there was a glitch - something was keyed incorrectly or they need something further such as additional authorizion. I’ve found I avoid headaches by doing a conference call with insurance and pharmacy and let them hash it out for themselves - they start taking about codes and how things need to be entered in the system that I couldn’t possibly relay that myself (I’ve tried - got a headache) and figure out what needs to be corrected. All that is to say, you can save yourself some headaches by having the responsible entities work with each other rather than you trying to manage things yourself. There may be things you need to provide - or remind your doctor to - but your role should be minimal.
If you’re not satisfied with your coverage open enrollment is a good time to compare your options. Your partner might help you so you don’t have to go through it alone, helping take some of the pressure off - and a second set of eyes is always helpful.
As for your therapist - if you don’t like them, you don’t get along, they’re not compassionate or simply not a good fit - get a new one. That applies to other practitioners as well - if you’re not getting what you need there’s no reason to stay stuck.
When you said

everybody needs to get checkups and see dentists and optometrists, but not nearly at the volume a Type 1 does. And if they don’t feel like it, they can skip appointments however long they want with nearly no issue.

… that’s not exactly correct. I know a man on dialysis - not related to diabetes but from living a hard life in his younger days. He must adhere to a very strict schedule 3 times a week - no exceptions. And I have a friend who has fibromyalgia, Lupus, Sjorgens syndrome, seizure disorder and a few other issues I can’t recall. In some ways she is less independent than many of us are, and she has more than her fair share of doctors to see. I don’t mean to make light of what you are going through at all, but the grass is not always greener for people with other medical conditions.
If you’re looking to connect with other Type 1s in your area (in addition to online here) check out the forum resources - there may be a local chapter where you can meet other people.
I hope you get the support you need for both your physical and mental health. Take care and keep us posted.

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I felt the same way after my diagnosis (7.5 years ago) and understand how isolating this disease can be. I have been dealing with depression my whole adult life and it makes managing T1D a lot harder. I am very grateful for the DOC community and the support we offer one another.

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