Spouses: what to expect from T1D partner

Hi there,
I’m new to T1D, my husband was diagnosed newly in his early forties when starting medication for another autoimmune condition. I’m struggling to juggle work, home and supporting him. I need some perspective, can any T1s be very real with me about the struggles a newly diagnosed diabetic is experiencing? I want to be supportive and empathetic and right now I feel like I’m drowning, selfish and frustrated. TIA

Hi @clurabelle and welcome to the forum. I was 3 when I was diagnosed and next year will be my 60th with diabetes so I can’t speak from personal memory - hopefully you will get lots of responses from people who can. However one challenge and frustration is the honeymoon period. At the same time you and your doctor are figuring out the anoint of insulin you need (which often varies at different times of the day), your body unexpectedly and unpredictably produces some of its own. That adds an extra challenge to the learning process and there’s no telling how long it will last.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has diabetes and works in the field so has a unique personal perspective that is particularly helpful.
I could say more but will defer to forum members who can share first-hand memories.

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Thanks for sharing - very much appreciated (also ordering my own copy of the book as I can’t get near my husband’s!)

I’m glad to hear you’re both into the book!
Here’s a link to a question someone posed about support for spouses - I think there was a reference and possibly a link to some resources: Forum for spouses

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@clurabelle Hello Claire, and Welcome to the JDRF TypeOneNation Community Forum! I hope you receive some helpful tips here based on other’s experiences while living with diabetes.

When I married, 56 years ago, my diabetes was totally messed up and needed me to take control and learn about diabetes; this became possible only with my brand new wife’s support and encouragement. Encouragement will be for you too to assist your husband as he learns his effective management skills.

Your husband will need to “listen” to what his body is telling him - bits like how different foods affect his BGL [Body Glucose Level], how his body reacts or feels as his BGL drops to the point he MAY need to eat additional carbs, and most importantly when he must adjust his rates [doses] of insulin. Listen to what he might share with you and keep this information in mind as you may need to remind him of certain things when [not if] his thinking gets muddled. It can be common, especially at first when learning diabetes management techniques for thoughts to be forgotten orv twisted as BGL approaches hypoglycemia - at these times, I suggest that you CALMLY remind him of what he should be doing and even go as far as placing a small glass of fruit juice in front of him or just fixing a snack for both of you.

Diabetes Education will be his greatest friend - seven decades into this autoimmune diabetes thing and i learn more almost daily.

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hello @clurabelle welcome! You will likely find that this forum is mostly people with T1, or parents of children who have T1, but to be sure, you are welcome here.

So I am the T1 and my wife is not. When I was diagnosed I went through a lengthy grieving period, but it initially started with anger and denial. I didn’t want anyone to help, I didn’t want anyone to know. I was 13 at the time so I didn’t even have the language to describe how isolated, frightened, angry, and punished I felt. I was in an untreated depression for almost 20 years and it affected everything and every relationship in my life.

The road to acceptance was a difficult one for me, because as a guy, I never ask for help (or directions but that is a different story). Long before I got to acceptance, all I wanted was for everyone to leave me alone. I ignored my care and did the minimum to survive for many years. After feeling terrible and several setbacks I did finally accept that I am not being punished, and that I did nothing to cause this autoimmune malfunction. I have since made amends to the people I’ve caused harm to, and try to take the best care of myself that I can.

I don’t ask for support from my wife… there have been times where I asked her to bring me a gatorade because I felt low, or my CGM was telling me Im low, but other than that all I expect is to be treated the same as anyone else… well maybe a little nicer than everyone else would be good too.

You didn’t cause this disease, you can’t cure it. Figuring out what he needs takes an expert in relationships. Just knowing that it is a grieving process means you should give space when it is appropriate, and support when it’s needed. If anything - make sure you are taking care of yourself. Actions speak louder than words. Read about Type 1, so you’ll instinctively know we can actually eat cake, candy, ice cream once we learn how to take insulin for all of those things, and we can run and play, and laugh and work hard, once we learn how to take insulin for all those things.

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Thanks, Dennis. That’s really helpful to hear. I think we are still tackling the grieving stage at various points when things don’t work as they should but I’m ready in his corner, cheerleading and encouraging. Hope your journey is going well, too. Thank you for the welcome!

Thanks for taking the time to respond, Joe, and for sharing your story. It’s helpful to hear from T1s as I have no idea how the adjustment is affecting my husband so I want to understand as much as possible so I can give the time, space or support he needs. I guess we are all learning on this condition all the time!

Hey there! I was diagnosed at 11 and am now 29.I am not married yet, but do think I’m with the guy I’m going to (hopefully soon :relaxed:).

Anyway, I was old enough at diagnosis to remember. Being diagnosed at 11 was hard, but I have since wondered what it would be like to be diagnosed later and not younger and I could be wrong but to me it would feel extra hard. Diabetes is a difficult diagnosis. It’s one where it affects literally everything you do and impacts you day to day with no break. That being said it becomes less overwhelming the longer you have it and eventually it just kind of becomes background noise. I remember I had a type 1 nurse when I was in the hospital from dka when I was diagnosed and she just looked at me and said honey I know it feels like the end of the world right now but I promise one day soon this will all become second nature to you, like breathing and you won’t spend as much time thinking about it. Which is true. I don’t but that being said, it’s still a substantial part of my everyday life and a part that I wish wasn’t there but accept that it is. Anyway back to my original point- it was hard at 11 but I was a kid. I don’t remember life without it anymore and I’ve lived more of my life with it then without. at least from my perspective being diagnosed at 40, when you’ve had a decent amount of your life happen and then be diagnosed with this plus meds for something else would be extremely hard emotionally for me. Since I was a kid I hadn’t had habits as an adult yet- I didn’t have a drivers license, I hadn’t had sex, I hadn’t tried alcohol yet so when I was old enough and ready to do these things (other things too but I don’t know why these just came to my mind) I already knew what I needed to do and didn’t need to change anything. I’ve accepted that my everyday activities are going to be impacted by diabetes sometimes and it’s okay but I would imagine it’s even more frustrating after not having to deal with it for so long.

Diabetes is also weird because I think most of us have a natural knack for making it seem like it’s not the end all be all because it’s not but we also don’t share as much because we don’t want to burden anyone else especially the people we love most with it. But sometimes, it’s hard because we can struggle a lot more with it than people know and we do have to make choices that most people don’t think about so I think there’s a mental toll that people who don’t have it don’t realize how challenging it is.

Now all of that being said from the diabetic side, I think you sound like a very caring and empathetic wife. I think the best thing you can do to support is ask questions about how he’s doing, learn what you can about type 1, if he’s open to it going to therapy that can be super helpful either by himself or with you, reading the book listed above is helpful. I know my endos office offers an adult support group for diabetics as well so meeting other people and other spouses could be good to. Just be there for him, but also take time for you. I never thought about this at my diagnosis but I have since, it’s not just my life that changed it was also my parents. So don’t feel bad if you also need a little mental break here and there. It’s a lot to process but it will get easier!

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HI Claire @clurabelle - as @Dennis usually says “welcome to the club no one wants to be in!”

I was diagnosed a little over a year ago at the age of 56! I had no prior family history and was very healthy up to going into DKA. As a well-established adult (cough, old!) when I was diagnosed, I know what you and your husband are going through. At first, I had no idea how much my life would change or how to handle such a drastic change to my daily life style. It does get better - trust me! I will also echo what everyone else here says - diabetes is, and always will be, a part of your life that you need to deal with. The question is how you deal with it and the people around you.

Because I was older when I was diagnosed, I am out and proud about it. I wear my CGM on my arm and wear sleeveless shirts, I subtly take my shots in public, I ask friends to wait an hour before going to exercise while I wait for some of my insulin to cycle through, etc. I also need my loved one to look out for me a bit more than before - not obsessively but just keep an eye on me if I start to look pale/need to sit down/ask for a snack, etc. I CAN manage my diabetes alone but I don’t live my life alone so I ask my loved ones to help support me.

The first year is all about trial and error - what to eat, when to eat, how to exercise, how sex affects your BS, how to have a drink (or 2), etc. Just being there to support and sometimes pick him up after a trial goes wrong will be the best thing you can ever do for him. He needs to manage this disease on his own but you will be there to support, encourage and potentially nag when necessary.

You and your husband got this! This unfortunate disease will bring you closer together.

Best of luck and keep us in the loop on how you are doing.

Mary-Frances

I was diagnosed at 21 and am currently 46 so i have lived more of my life with than without T1D. The one thing i would say is learn to recognize his physical symptoms of hypoglycemia (low blood sugar). I have really worked hard to.eliminate as many low events as possible but even still i really get quite temperamental when i get very low. It took me a ling time to teach my new wife that im not mad at her but i have to care for this issue now and cant hold a conversation with you about anything until i do . I am still happily married 17yrs later but the first couple of months were a little rough. I have a little sticker on my toolbox that says " I’m sorry for what i said when my blood sugar was low." The rest is all about learning all the different cause and effect situations that life vs insulin cause. Best wishes and you guys can get back to a normal life given a little work a d some time. Jason

Hey Claire, before I just want to say that I’m fairly new to this thing too; I’m only about a year and a half in. I’m still dealing with some frustrations, but the biggest thing I can tell you is that you cannot control this. This took me forever to accept. Currently, I’m sitting at 375 after eating some delicious bread. I thought I gave good enough bolus, but I guess not. What’s important is that your husband will have bad days. This condition isn’t something that you can just perfect as you move along. Adjusting to having Type One was and is an experience that no one can perfect.

I didn’t mean to sound so depressing, but I got to a point where I was just so frustrated why I was always getting low or high. Since then, I’ve been able to adjust my basal and bolus to get it better but not perfect. It took me a while to realize that. That you can’t be perfect in this. Bad days will happen and not only is that expected, but it’s okay.