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                      Relationships and Diabetes


Arturo posted his dilemma:

I am going to talk with a couple who is getting married in a week. He 
has had IDDM for many years. She wants to talk to me about being married 
to a person with DM. What are the issues I should bring up?  Reactions? 
Diet "control? Glucagon? Complications?????? Give me ideas! Remember 
they are young and they are getting maried. She knows very little about 
DM so far.

The following posts were responses to Arturo's post. The advice and 
wisdom in these posts apply to many types of relationships, not just 
marriage. 

(Established 11Jun96; not yet updated.)
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Finally a topic I know about. My husband and I went through this almost 
3 years ago when I was diagnosed and we had just started to date. 

The best piece of information I can share is to develop "code words" or 
signals. My husband and my teenage children do this all the time with 
me. They can tell if I am starting to have low blood sugar, sometimes 
before I do as some symptoms develop before my levels drop. I get grumpy 
or moody or start to talk fast and then my 16 year old son "enjoys" 
bringing me a roll of Lifesavers and says, "you're on a roll" with a 
sheepish grin. My husband and daughter usually just hand me a glass of 
juice or Lifesavers and say they love me. I "get the hint" and we go on 
with our day. If I am high, I usually "get invited" to go for a walk.  
These discrete suggestions have saved lots of frustration for all of us.  
I get my reactions treated faster without getting too angry at them due 
to low levels and they are involved in my care.  

Also, she should be aware of the Jeckyl and Hyde syndrome as we call it.  
Everyone I live with knows that BG levels cause 80% of this and usually 
"blow off" the episodes.  

As for diet, it sure helps having an understanding spouse that if they 
want to eat the junk food to do it elsewhere. It was very hard for me to 
have that stuff in the house and not be able to eat it. Now my husband 
and the kids go out for treats on their own a lot of the time. My 
husband also doesn't question everything I eat. He knows I can have some 
of the forbidden sweets on rare ocassions so he doesn't say much about 
it.  

I hope this helps and is what you needed.  I know my diabetes can be 
very hard on my husband at times, but he is very understanding and 
supportive. He knows I am the one that ultimately has to do everything 
for my care, but he helps me deal with it and listens when I am 
frustrated.
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Beyond the obvious medically necessary subjects of highs and lows, she 
and her husband-to-be need to learn to keep open communications and 
sustain cooperation. This is vital so that both can learn what level of 
input she can give and how to give it. The last thing he is likely to 
want is another "Mommy" or a "diabetic enforcer" telling him what to do 
all the time, or questioning him about whether he should be 
eating/drinking/injecting etc. ad infinitum. I know that when [my wife]
tries to tell me not to have something or how I should take care of 
myself it only causes me to get stubborn or ticked off. After all, I'm 
the one who has to balance my treatment, and the one who knows how I'm 
feeling, how my metabolism has been that day, what I've had to eat 
and/or snack, and will feel the consequences of a bad calculation in my 
treatment. Fortunately, as I've shown responsibility in caring for 
myself consistently (which I hadn't done in the early years of our 
marriage) she has developed trust in me to make the responsible choices 
and to properly adjust for the occasional treat. Very rarely now does 
she slip and become the "enforcer," and when she does, she apologizes.
     
On his part (the part I haven't seen anyone else address yet), he has 
to be willing to be open with her about how he feels, why he makes 
certain treatment decisions, and also to listen and accept her input. He 
must realize and accept the fact that even though he is still the one 
that will feel the immediate consequences of poor choices, *she* will 
also have to pay the price of his poor control in the long run. She is 
the one that will bear the burden of extra care in case of amputation or 
disability, and she will be the one left alone if he should die. I've 
never met a women, yet, who does not highly value security, and if his 
attitude and habits on his diabetic care are cavalier and lazy then he 
is not giving her that sense of security that she needs. Now, when [my
wife] asks if my blood sugar is alright, I go and test even if I feel 
fine, just to be sure and to reassure her. (Most times, though, she is 
right and I end up thanking her for helping me catch a high or low). 
Another thing is that when she accidentally pulls an "enforcer" on me, I 
will explain why I'm doing/not doing/eating/not eating whatever it is. 
In some rare cases (always involving some snack or food) if I can tell 
that I don't need to eat the item immediately and that she is really 
uncomfortable with me eating the food, I will just put it away and wait 
till she realizes what she did and says "oops, sorry" which indicates 
that she's relaxed again and remembering who is responsible for my 
diabetes.
     
The most important thing he can do is to maintain his treatment 
responsibly so that she feels that she can trust him about it and has a 
sense of security that he is doing what he needs so that he will be 
alive and healthy and loving her for a long, long time.
     
If either of them have access to the listserv, recommend them both to 
read the list posts as a way of getting on the same wavelength on 
information. Sort of like making sure they are both on the same page 
at the same time. It makes conversing about diabetes so much easier.
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My experience was with the "overbearing" SO. This caused all sorts of 
problems in the relationship. Looking back on it now, I can admit that 
it was mostly my fault. I took the attitude that this (DM) was my 
problem and leave me alone (and I was doing a very poor job of dealing 
with it).

Dealing with DM in a relationship is a team effort and requires a lot of 
cooperation, understanding and caring. This process should not just 
apply to SOs, I am in the middle of dealing with my daughter on this 
topic and she is at the stage where "dad can't be sick" and will not 
talk about it.
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Bring up that the children most likely maybe won't get the disease, and 
he may have problems with too many changes or spontaneity in adjusting 
his insulin. He'll need some information beforehand. If they've been 
going out for a while, it shouldn't be any more of a problem later than 
it was then, except he may have or she may notice his having to wake up 
at night with a high or low BG, and what he usuaally does to correct for 
it, and that if he is unresponsive or too argumentative without a good 
reason (whew, is that loaded or what!) it may be due to his BG. Also, 
don't badger him too much about it, as that can get to the smothering 
scene raather quickly, although there is a temptation for that if he 
starts to have problems. Support is often welcomed, condemnation and 
instruction rejected.
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Knowing the facts concerning Diabetes, what to expect when living with a 
diabetic and training related to the care of that individual are of 
utmost importance, in fact, essential for a harmonious relationship to 
survive.

One factor to be considered is the love factor. The love factor involves 
deep, profound emotional involvement. It is much easier to cope with 
one's own infirmities than with those of the one you love.

Loving a person living with a chronic illness is not an easy task. You 
need to permit your partner to grow and make mistakes. Always be willing 
to listen, learn, and support. This is a tremendous undertaking.

There is a bowknot called a truelove knot. It is very difficult to 
untie. Supposedly it is a symbol of lasting love. I have one, decorated 
with hearts and wildflowers, decorating my entry doorway. The truelove 
knot could be likened to a wonderful relationship. Love, laugh, treasure 
every moment together, while sharing the good and the bad times.
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Tell her about the risks for eventual children beside what she can 
expect to be confronted with for a long long time. High consideration.
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There are several issues that should be discussed, as well as the
standard answers about DM: 

1)      The importance of DM regimen - injection and meal times
2)      The recognition of HYPOs and how to deal with them

My wife still has trouble understanding the importance of having
reasonably fixed meal times and that sometimes it can be difficult for 
me adjust my regimen despite using the "pen". Our evening meal can be 
anytime between 6:00pm and 9:00pm.

Dealing with hypos is important as my wife has pulled me out of a few
of them.
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You might suggest a diabetic education course for her, or possibly 
together as a couple.
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I have been married for 18 years to a non-diabetic. He has been 
absolutely wonderful. The first two or three years were very difficult 
for both of us. He didn't know anything about diabetes and had to learn 
the hard way. He now can let me know, in a subtle way, when my sugar is 
low and will nicely ask me to test.

I asked him what he would say and he said to be PATIENT and not 
overbearing. If I have a reaction he puts it in a cabinet (his words) in 
the back of his mind and forgets about it. I don't remember half the 
things I say and he just doesn't take it personally. He said it was very 
difficult at first, but he realized that it wasn't really me.

He also needed some time to be alone, which I gave him freely. He had to 
change his lifestyle. He was a party animal. He would go out till all 
hours and get something to eat at 1 or 2 in the am, go to bed, and get 
up for work three hours later. He no longer did that, except Friday 
nights! That was his night for the first three years of our marriage. He 
doesn't go out at all anymore, except occasionally fishing with a 
friend.  

Meal planning is very important. We always plan ahead. We make sure I am 
close to a store or bring something with me for my snacks. He does 
occasionally remind me to eat, which can be embarrassing. But I know it 
is for my own good. If you are going to have a late supper, be sure to 
be prepared.

Future problems. He wasn't prepared for the complications I have been 
experiencing in the past 10 years. First, the hysterectomy, two years 
after we were married (there go the children). That wasn't too bad 
because he claimed he didn't care. Then, came other complications - 
thyroid, gastroparesis, and foot problems every year. I have bunions on 
the side of my feet and they act up at least once a year. He said that 
was the hardest part because:
QUOTE:  I don't feel the effects physically
        But, I feel the effects emotionally.
        So, I do whatever I can do to help her.
I thought that was so beautiful. I had to share it with you. I'm so 
lucky to have married him. He's a little rough at times, but, I love him 
for it. He's only looking out for me. I didn't mean to go on like this.  
But I just want you to tell this young couple to be prepared, the road 
isn't smooth and can get quite rocky. Just love each other and be 
friends. COMMUNICATE. We never went to any groups, but that does sound 
like a good idea. If she has a computer, tell her to join our team.  
We'd love to help her get through the rough times. There will be some.  
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I guess some people say they maybe able to cope with the physical 
reality, but it is the psychological things that have the biggest 
impact, i.e. the moodiness, irritability, occasional (?) depression, 
bouts of denial... Given some of the medical profession's inability to 
admit/face up to some of these themselves, it maybe worthwhile "warning" 
her of their potential impacts both directly on them and on those they 
may have to deal with!

I copped DM at 28, but we'd already been married five years and she went
through it (from me!) a little in the 9-18 months prior to diagnosis...
Having gone through that, she's pretty much in touch with the "effects"
and many of the "causes"... for that matter so are the kids also, young 
as they are..(12,10,8,6 [ish!]) 
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I guess seeing as it becomes a team effort when you become married
partners, the non-DM partner may have to develop some supportive tactics
to assist the DM partner to say NO in some situations (parties,
get-togethers with relatives, etc.). At these things, many people don't
seem to understand that you really should not and cannot consume some
things any longer. Patience and "longsuffering" seem to be good "virtues"
in a non-DM partner. All these problems tend to be compounded/clouded 
once children arrive on the scene, so they mave have to be at times 
diplomats between the DM partner and the rest of the world !
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As for the young couple, she will need to know how to tell when her 
husband is having a low bg, and what to do-even if he is uncooperative.  
She will need to know about mood swings - not to take them personally -
young brides get their feelings hurt easily. 

She will need to be able to support him emotionally when things are not
going right - complications to diabetes. She needs to know there are
significant possibilities that there will be complications and the kinds 
of complications that can face them in the years to come (so there are 
no giant surprises). Often brides, and grooms for that matter, expect a 
rose garden marriage - it does not happen for anyone - there are always 
problems. We just see ours and do not realize others too have their 
problems.

My husband is IDDM for 7 years - he was dx within 1 year of our 
marriage. We have gone through Symes amputation to BNA, retinopathy
(laser tx. and 2 viterectomies), mood swings to being hospitalized from 
the depression related to infection, and amputation. Yes I have survived 
and I would not wish that on any new bride - but we do what we have to 
do - if the commitment is there. The list of other complications go on 
but we deal with each as they present themselves. For the most part - 
his bg's are good 95-120 with insulin 2x per day.

Tell the young bride to find a support group - in person or a group like
this list and know there are people out there for her too.
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I have read all of the responses to this posting already, and I
must agree with nearly all of them.  I was married for only 3 months
before my diagnosis was made, and my wife went through ALL of the
training with me.

One thing I might add:

There are times when the frustration and anger towards DM becomes too 
much, and I simply reach into the cupboard and start eating cookies.  
Usually, within about 3 or 4 cookies, I feel satisfied that "I showed 
this disease who is in control...so there!". Normally, my wife is very 
concerned about me and my diet. She asks me every night how my BG levels 
are doing, and I tell her most of the time. However, it is important for 
this young lady to know that sometimes sugars just are out of control...
no cause. Also, sometimes a DM needs those "darn this disease" moments 
of.....like stuffing one twinkie in your mouth when your wife is not 
looking just so you can remember what it is like!

Anyhow, these incidents are OK (and probably healthy) as long as they
are infrequent and not too much.

You might also mention that this marriage and DM will give her an 
excellent opportunity to improve her own diet and control her own 
personal weight (if she wants). My wife has lost several pounds since I 
was diagnosed, and she feels great. She has learned how to provide my
correct proportions, as well as how to get the proper amount for herself
based on my meal.
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Topics should include:  She needs to learn about dm and how to help him.  
However, the dm is his and she can't control it for him.

Emotions: Just because he is pissed off and angry it doesn't mean he no 
longer loves her. It may mean he is hypo or hyper. She must learn how to 
help him control his bgs. Hypos and hypers happen. Learn the signs, 
learn the treatments. Get a glucagon kit or two. Keep fast acting carbs 
handy. Learn how to give an injection, then actually give him a few so 
she will have confidence.

Complications:  They can and likely will happen sometime. But there are 
treatments for virtually every complication from visual problems to 
kidney problems, to impotence. Learning dietary guidelines and effective 
treatment and preventive routines can reduce the burden of complications.

Rationality:  Tight control is not always possible. Highs or lows don't 
mean you will die immediately. You can indulge yourself occasionally.  
Lots of wild sex is allowed although you can go hypo from it.

Daily life:  Work out some dm routine for eating, injecting, testing, 
working, and relaxing. Life doesn't have to be boring, but control is 
easier when a solid foundation of dm care is built.

Read and study dm but don't make it the center of the universe.  
Education is one thing, obsession is another.
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One of the things the lady is looking for is possibly assurances that 
this condition is something she can handle. It is something we all talk 
about, this dm thing, this monster, friend, condition, killer disease, 
etc. It is still the same disease, YMMV apply here. Can this "thing" be 
handled? We all, I think, would say yes. Does it require additional work 
on the part of the spouse? That's where all the excellent responses we 
have read come in handy.
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Be sure to tell her that all newly married DM males need very special 
handling. Some that I can think of:

Breakfast in Bed Every Morning
Foot Massages and Back Rubs every hour
Drawing of the Nightly Bath Water (With Bubble Bath and Rose Petals)
Accommodations for an insatiable sexual appetite etc.  :-) :-)
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In September I will celebrate my third wedding anniversary. My husband
has had IDDM for many years.

One of the first things I had to deal with was meal planning. We eat 
meals around the same time each night and I learned to let him know if 
there would be a variation so he could plan his snacks and insulin shots 
accordingly. I also learned to tell him what was on the menu so he could 
tell me to cut out a starch if his BG was running a bit high, or so I 
could add a starch if he was running a bit low. I also had to make it 
clear to friends and family that they needed to let us know when food 
would be served at parties and other special events, so Mike could plan 
for that too.

One of the toughest things to deal with at first was the mood swings
and learning not to take them personally. The wild hypos also scared the 
heck out of me, but I spoke with Mike's endo at great length and learned 
what to do to bring him back to normal. Since the brain is not really 
functioning [normally] during a hypo, I still have to remind myself that
[my husband] is not himself during a hypo and he can say or do some 
really nasty things that I should just ignore.
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Encourage her to learn all she can. Make specific suggestions, if 
possible. Is there a seminar she can attend? Educational materials 
available? A support group? I would encourage her to be supportive and 
flexible - without becoming the Diabetes Police. Explain the fine line 
between "supportive" and "overbearing." She will need to learn her 
husband's comfort zone regarding her participation in his DM. I would 
definitely mention hypos because she will, no doubt, have to deal with 
them. And as his partner, she will sometimes be the one to catch them 
and to treat them. I think she will probably want to know about having 
children at some point, so be prepared for that. And she will probably 
want to know about the long-term effects of diabetes and what she can 
expect several years from now. In all of this, I would stress the 
partnership aspects. You probably won't bear the burden of the entire 
agenda. If she's interested enough to want to talk to you, she probably 
has several questions. 

I just remembered a book that you might want to suggest. I haven't read
it, but it sounds like a good one. It's _Diabetes Is Not a Piece of
Cake_ by Janet Meirelles, RN, CDE. The description says it's a book
"full of information and understanding for the long-ignored nondiabetic
who shares life with a person with diabetes. Will open the lines of
communication, smooth out conflicts, and thereby improve the relationship
and ease the burden on both sides. Clearly written, up-to-date, detailed.
Based on 300 questionnaires and Janet's professional experience. Valuable
reference section full of timely where-to-find-it and how-to-handle-it
information." 1994. 288p. $14.95.
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If I could advise or educate: I would explain what diabetes is. I would 
cover the basic emergencies (lows how to deal with..how to know a high 
if ketones show what to do) how to tell a low..when to call 911. Show 
her how to use glucagon, that changes in blood sugar can make a person 
crabby or moody or very tired.. That highs are dangerous and what highs 
are too high for the new hubby and what to do for too high a high..
and also what ketones are and what they indicate.. That she should let 
him handle his diabetes unless he asks for help or unless he Needs help..
I would also go into the potential problem of impotency. She needs to 
learn how to give shots..You need to teach her how to do that or at 
least have her familiar with a syringe so she isn't afriad of them.
Maybe show her how to test so she knows what that means and how it feels.
Suggest they go to some support group meetings until she feels she
understands a little more about diabetes. I would stress to them the 
potential health problems should they get the idea to try denial.. As 
far as diet..the man ought to know his own diet.. but she needs to know 
how important it is to follow the food program. She ought to get the 
book by June Biermann and Barbara Toohey. actaully any of their books 
are good. Give her any info you may have so she can read. Listen to her 
and answer her questions. Assure her if she seems afraid. Above all..
please tell them to enjoy each other..in spite of. ;)
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The most important things she has to know are how to recognize low or 
high bg's and know what to do, and sometimes recognizing the very early 
signs of a rocketing low are extremely subtle and idiosyncratic.

She's got to learn, learn, learn, especially about the relationship 
between diet, exercise, and insulin - and stress. Take courses, read 
books, whatever.

Don't take anything personally, and use the mood swings as a guide to 
bg's.

Make a contract that she can demand he test his bg's at any time, any 
place without giving any reason, and he will not be angry or hurt or 
(self) recriminatory, he'll just do it.  In return, she agrees not to 
demand that he test as part of a power trip or other negotiation that 
has nothing to do with DM.

And to remember that loving is more important than anything else.
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