I am not diabetic, but my partner has type 1. He has been living with diabetes for around 30 years. His method of management is, I guess, minimalist: He uses non-perscription insulin (Humulin), does not have any kind of meter for monitoring blood sugar and administers shots or gobbles skittles based on how he's feeling. This seems to work, well, OK, for him during waking hours; not so much when he's asleep. It's the when he's asleep thing that terrifies me, especially because we don't live together. We're in schools 1500 miles apart. He doesn't have a doctor; he has minimal insurance provided through his graduate program. He hasn't been to a doctor of any kind in years.

I can't speak for him; I can't know what it's like to live in his body, to experience a different standard of what it means to feel "normal." I don't have to throw money at big pharma just to stay alive. I haven't endured the periods of life-threatening poverty that he has, when he had to ration insulin and was practically starving. I haven't suffered the kinds of losses he's suffered in his life, things I won't go into here out of respect for him. But he has had kind of a rough time of it. It's no wonder, then, that he feels anger, resentment, frustration, and fear about his condition, and about the lack of resources, support, or understanding for someone in his position. I certainly do.

It angers and depresses me that our society and our health care system can't do more for him, and people like him. Insurance companies treat diabetics like lepers...they don't want to have anything to do with them. Unless you already have a good salary and good insurance, it just seems like you're s*** out of luck. I have seen good, well-meaning people cheerily inform my partner, "you need to get a monitor, you need to get a good doctor, you need to do x, y, and z." I know it's well-intentioned advice, but putting that advice into practice means spending money and more money, endlessly, on care the majority of the population will never need, much less think about. And that sucks. Given my partner's past financial difficulty, just the thought of the cost of decent health care is enough to make him break out in a cold sweat.

All that said, I know there are things that he can do with the minimal resources he has to better manage his condition. If he would just eat three meals a day, that would be something. Not being a doctor, I don't know how it works, exactly, but it seems to me that if he would eat a more regular diet, he would sleep better, and if he slept better he would maybe drink less, and if he drank less he might have more energy and feel happier...

I don't know how to get him to take better care of himself. He's aware, intellectually, that the way he lives isn't healthy, and that he needs to make changes. But emotionally he's in denial. Many times when I've tried to bring up the subject of his health with him, he's brushed me off: "I'm fine. I know what I'm doing." I think if I could get him to talk with other people who are dealing with what he's dealing with, who have had the same kind of struggles, it might be a good first step. But I don't know how to make him do it, or rather to get him to do it for himself. I've given up telling him how much it scares and upsets me; he knows that well enough by now, but it's not motivation enough for him. Finishing his PhD and starting his career doesn't seem to be motivation enough for him. He has dreams about the future, but he's not dealing with the present in a way that will get him there. What can I do?

Tags: depression, frustration, health care costs, humulin, no insurance, relationships

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Jake, this is exactly the anxiety I've been turning over in my mind, for a long time now "What if I make it worse somehow? What if, by confronting him, I cause him to shut down and retreat even further from the problem?" I've been in relationships, and seen relationships, where this happened. But, as you sort of allude to, if the relationship is truly a good one , that kind of encouragement can work, and if it doesn't, maybe it's not so good after all. I think we are moving in the direction of "love being a motivator to change," which is a good thing. :)
In retrospect, I think I overreacted to the tone of your comment and passed over the substance. I realize I was defensive, and you do have a point. While I wouldn't say that I've been in denial about my boyfriend's condition...well, OK, maybe I have...I have been hesitant to dive headfirst into these hard conversations, for fear that they won't go well and only lead to--like you mention--resentment. And, when I think about it, though I'm aware of how he doesn't care for himself the way he should, because we live so far apart, I don't see that in action on a daily basis, so it is easy for me to put out of my mind. The last crash I had to deal with on our most recent visit was the motivator for me to be more actively involved in his health (though as many people have noted, I can not make these changes for him).

Your comments, though they put me in defensive mode, were helpful to me, and made me consider, however reluctantly, whether this is a relationship I can be in. I realized that, as much as I love him, it can't continue this way. So while I didn't go so far as to give him an ultimatum when we last talked, I did make clear to him that things can't go on the way that they have. The conversation went much better than I anticipated, and I learned a lot. Something he didn't understand about my perspective, which I didn't realize, was how frightening his low blood sugar episodes are for me. Because he doesn't remember them when they happen, and because I've come to handle them stoically, he hasn't known how hard they are for me to deal with, both logistically and emotionally. This seemed to be an epiphany for him. He also explained to me how his bad habits had developed and why he hadn't tried to make changes, even though he's known that he should. He admitted that if he could get affordable testing supplies, he would willingly get back into the habit of testing regularly. He promised me that he would see a doctor and readopt good regulation practices. We'll see...he's not off the hook yet, but just talking about it and hearing him open up about it and express a willingness to do better was such a relief.

This is a conversation I wish we'd had a long time ago. Just the little bit of feedback I've gotten since joining this site a few days ago has given me the broader understanding I needed to approach that conversation. Anyway, thank you for your part in pushing me in that direction...just maybe try to have some more tact, ya know?
Emily --

Have you read a lot about Type 1? I'm asking because I think once you do, you will understand that it can't be ignored, no way no how. I understand the frustration with insurance co's (oh do I!!) and money, but please know there are serious lifelong complications or even death for ignoring this disease.

If he knew he had cancer would he simply ignore it because he will need to spend money month after month to see a doc and get treatment?
I don't know that much about Type 1, but I do know it can't be ignored! Of course, the expense is worth it, and of course the cost of treating it appropriately is marginal compared to the cost of trying to treat the complications that can arise. I think I was just expressing my personal anger that it should be so expensive. It's unfair. Grr.
I could not agree more. I definitely neglected my D care at times of my life because of financial reasons. I am fortunate to have wonderful health insurance now, but even with wonderful health insurance, I still end up paying about $400-500/month in medical expenses (test strips, insulin, pump supplies, doctors visits, blood work, paying off old medical bills, etc). I make good money and that's still a hefty dent in my monthly income! And I do know how frustrating it can be to have to call around to various assistance programs to get the basic supplies that you need.

I think some others on here have recommended a few good books; Think Like a Pancreas is probably the best. It's fairly technical, but you seem motivated enough that it shouldn't be too hard of a read. It will give you good insight into what needs to be done to properly manage diabetes.

Finally, while I don't agree with how Zoe stated it, please keep in mind that there very well be NOTHING you can do here to help your boyfriend. I think what you're doing is wonderful; I know there were times in my life where someone reached out to help me and I was very appreciative. BUT, I was always willing to make the change. If your boyfriend isn't willing to make the change and do what needs to be done, then it's not going to happen. Sometimes we have to hit rock bottom before we can get back up again and fix things, and sometimes hitting rock bottom needs to happen alone.

I am sorry you're going through this.
Thanks; as you well know, it's hard sometimes. But we are getting through it. I appreciate your comments. And thanks (to you and to MidwestMommy) for the book recommendations! I'll definitely have to look for them next time I go to the library.
A type 1 who doesn't have a meter and doses based on "feelings" is imho a type 1 with a death wish.

30 years ago we had urine testing and no bg testing, but that actually wasn't all that much better than going on "feelings". A urine test will never tell you you're hypo.

And even when home bg testing became readily available, still not everyone was using it. It's a little hard to understand but it was true.

But bg testing is just so many steps ahead of not having bg testing. It'd be positively, the last thing I gave up.

That's true, I don't really know. And most of what I know about how T1 works I've learned from him. So I suppose it's not wise to make inferences about what "works" and what doesn't based on one person's experience. It's frustrating not to have direct experience of what's going on with him; I have no way of knowing what "normal" feels like to him. I feel like my perception of the situation is really limited. That's why I'm here to try and learn more, so I can be more informed about what it means to be a healthy diabetic and how you get there.
Ok...but he honestly doesn't know when he is "normal". He doesn't test his blood sugar, so he really doesn't know if he is low, normal or high, and he isn't seeing a doctor or getting his A1C tested. He *thinks* he knows what his blood sugar is, but in truth, he does not. If he consistently runs say 250 for example, in time this will feel "normal" to him even though it is very dangerous to his health.

Type 1 doesn't act the same way every day, and the only way he will know what is going on is if he tests his blood sugar. The amount of insulin needed will vary from day to day too, based on his food intake, exercise, stress, etc. It isn't like taking an allergy medicine or high blood pressure medicine where you take a fixed dose every single day, unfortunately it is much more high maintenance than that. Again, the only way he can know for sure if he needs more or less insulin is to test his blood sugar.

See if your local library carries "Using Insulin" by John Walsh or "Think Like a Pancrease" by Gary Scheiner.

In all kindness, I think once you educate yourself and find out what this disease is all about, you will be very shocked and frightened at how he is managing things. If a parent were to adopt his approach for taking care of their T1 child (no meter/no blood sugar testing, no doctor visits, multiple seizures), this would likely be looked at as abuse and neglect. I hope that puts it in perspective for you.
I had seen this earlier and it's an interesting thread. I had quite a few wild years but always finagled some insurance somehow. I drink quite a bit too, although not as much as I used to these days (I'm 43...) so I'm not 100% sure the *eeek* about drinking is totally correct but I can't imagine getting a load on without a bunch of test strips around. I also stuck w/ Humalin until 2008, long after it's time had passed, and it works ok but when I got my pump, the doc & sales nurse explained that it had a 53% chance of peaking when it was supposed to. This, in turn, can cause a lot of irregularity in your bg that can be almost impossible to fix. MrEmily may be pretty sharp to have gotten along with it as well as he's done.
I am more or less in agreement with AR. I had a few wild years and have made it through them without any problems. If your boyfriend is in graduate school he is probably the perfect age to "think" he is managing his T1 effectively (invincible) and drinking is likely a bigger thing if he is still around campus. His drinking does not really concern me as it will likely diminish as he ages and exits the college scene. Your boyfriend must still be "smart" about drinking and testing his BG more, or some, would be the first start. The not testing is a big concern. Even at my low of care I was still testing my BG at least 3-5 times a day. He needs to test his BG more to adequately manage T1. Plain and simple.

The other thing I would suggest is that he try a mail in A1C test. I think Walmart now sells one you can buy and use for under $10. Somewhere in the back of his mind he has to be wondering what his A1C is and this would provide him a cheap and confidential way of finding out. If he scores really poorly it might jump start him more than anything you can do or say would.

And as others have said if he is unwilling to change or adapt, then there is nothing you can do. Be patient and understanding with him, as he is probably unsure (and possibly scared) of changes to his diabetes management. My thinking was, why change something that isn't broken? Even when my personal care needed to be updated.
I was careful in my post to qualify it by saying IF he is alcoholic and not to jump to the conclusion that he necessarily is alcoholic. He isn't a kid anymore - he's 39. That's pretty old for a T1 diabetic non-alcoholic to be getting completely blitzed regularly. Maybe you haven't known people who are alcoholic, but I have and it is supremely destructive. I'm surprised acidrock hasn't had experience with this - I used to play in bands as he did, and I need more than one hand to count the people I knew who lost their lives to drugs and alcohol.

If he isn't alcoholic, then he should be able to stop drinking and figure out how to manage his diabetes better, then add the alcohol back and figure out how to manage that. But I'll repeat - if he is alcoholic then trying to manage the diabetes while he is still drinking is a recipe for disaster.




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