Fighting the Unseen: Life With Diabetes

First things first, thank you for reaching out to this community on behalf of him [your spouse]. It shows that you are a truly caring partner and supporter of him. Having a spouse reach into the unknown on behalf of you is not something that we find every day. So, thank you for that.

Second, I cannot promise that my suggestions work and I'm sure some of it won't even apply to your situation, but I'm going to offer what I know and hope that it helps.

1. Please keep in mind that he is just as frustrated with his situation as you are. I would assume that he is a normally intelligent and responsible individual? As a person with Type 1 for 11 years, I can tell you that my mortality floats in the back of my mind on a constant ongoing basis. It is always there, breaking me down. I think about it every morning, every injection, every finger stick. And my heart is pumping so hard that it feels like it's going to explode every single time I wait for the results of my last A1c from my Endo. I want to live healthy. I don't want to have amputations or complications. I want to bear children and live forever with my fiancée. I try so hard and make the best decisions that I can (with what I know) and yet my A1c has never been under 7.5. Currently, I'm recovering from a 9.5 plateau and am at 8.5. It is extremely difficult to face your mortality on a multiple times per day basis. Every time I inject or test my BG, I'm thinking "If I don't do this, I will die." So, please keep that in mind.

2. I hit a slump of "I just don't want to" every few months. I will be fine and act okay every day, until it'll just hit me at some random moment. Maybe my syringe bent when I injected and it hurt and I got pissed. Maybe (when I was on the pump) my tubing clogged AGAIN and I got frustrated. Maybe I got a sickness, the flu, and my BG just WOULDN'T come down from the 200s no matter what I tried. I hit those slumps, though, burst into tears from the constant stress, and then my fiancée sits down beside me and says: "I know it's hard." That's all that I need. For him to acknowledge that it's really really hard to constantly be worrying about the effects of what you do on a normal day to day basis. In fairness, I also turn to him (when I'm feeling better) and tell him: "I know it's hard to be married to a diabetic." But, when I hit those slumps, him acknowledging my frustration and pain- him saying that he knows that I'm TRYING really helps to pull me back out and get back on the "horse".

3. My fiancée will also go on splurges where he will pull out articles (like you said) and show them to me. Not necessarily reading them to me, but sometimes he will leave a magazine page (or an internet print out) open on the bed and I'll see it. It helps to know that he cares. And when I know that he is researching things to help me, I know that it is bothering him as well, and then I get my act back together because I know that I'm not only fighting for my life, but for our life together as well. If I'm gone, his whole world will be turned upside down. But, he is never direct about his support. If he were to tell me: "I need you around", then I would feel "put on the spot" and get defensive. His small acts give me time to ponder on my own and are subtle enough so that it doesn’t feel like he is lecturing me.

4. Try taking all of the sugary treats out of the house. If it's an issue of him overeating, maybe having the stuff unavailable will help. If you are someone with small children, honestly, if it's an issue, having the stuff around the house isn't good for them either.

5. If it's just a matter of him overeating on regular foods and then NOT injecting, then maybe it's a different kind of issue. It could be a cry for help. Maybe he should speak to a human behavioral psychiatrist to find out where his anger or sadness is lying. Many type 1s seek counseling and it's nothing to be ashamed of. I've sought help probably 5 times in the past 11 years and it helped me come to terms with my disease.

6. Is he a first generation diabetic? Maybe he needs to talk to people who are also type 1 who will be able to understand him. He may buck at the idea at first, because I did too, but talking about my disease and my problems to ANYONE WHO WILL LISTEN has helped me immensely in the past 2 years since I started reaching out. I wouldn't call it a "support group", but essentially that's what it is. TuDiabetes.org has been a great help to me.

7. Please don't guilt him into taking better care of himself. He feels guilty enough, I can mostly assure you. Most of the time when I get a high BG number or A1c, I am mentally beating myself up over it. Badly. I end up thinking very negative thoughts of myself and I hate myself and I punish myself mentally. It's hard not to feel guilty when there is so much pressure put on us to have good numbers. But it's really not so easy. Every single diabetic reacts to medicines differently. Every diabetic reacts to exercise, foods, dosages, stress, illness in an entirely different way. So, to get a cause and effect pinpointed is very difficult with this disease because we can in no way be generalized. Everything affects our BG levels, including stress and the flu.

8. Is there a way you can find someone who is diabetic around your area? Maybe find someone who seems to be stable, but ask your husband some questions about diabetes so that you can "help" the other diabetic. That way, your husband will feel of use and helpful and it will force him to reflect on his own diabetes care. Then, when he's ready, he can meet that other type 1 and see that he is not alone and that we all struggle.

9. Also, (I know I'm going to get "shot" over this) when I was on the pump, I had the ability to "shut off" my diabetes thoughts. It became so habitual that I wouldn't even think about my bolusing and such anymore. Pumps are AMAZING, but for me, it was a great tool for me to ignore my diabetes. I'm doing much better on MDI. If he’s on the pump, he might consider coming off the pump for a few months to get his focus back on his body.

I hid my disease for many many years and didn’t really come to grips with it until a few years ago. I would inject and do what I HAD to do, but over the past few years, I've really opened up about it and I will talk to anyone who asks. But, I didn’t start to open up about it until I decided I was tired of feeling sick. Then, I found TuDiabetes.org and a whole new world of diabetic friends who understood (for the most part) what I was going through. I felt good about myself when I was helping other diabetics. And when I felt good about myself, I would take better care of my body, therefore taking better diabetes care.

I am a first gen diabetic and I had a lot of resentment toward my family and friends because it is something that is completely devastating and earth shattering. I was completely alone in the disease because there was literally no one else around me who had type 1. And I refused to go to a support group.

At one point, though, my mother had me volunteer at a children's medical center and explain to kids what diabetes was and how to take care of yourself. Once I saw those little guys injecting and looking at me with those innocent eyes, my world of hell didn't really matter anymore. I just wanted to help them and to prove to them that type 1 is not the end of the world and that we can live a great life, even with the disease.

Over the past 2 years, I've met 2 other type 1s. One type 1 I've met blind injects and doesn't test his BG ever. He scares me, but he is my age and really reckless. The other type 1 is in his 40s and also blind injects. Sometimes he even forgets his basal.

Thank you for reading this post and for taking the time to learn more about living with a chronic disease. Keeping an open mind and an open heart (and mostly a closed mouth) will help your spouse in living a healthy life. Thank you for supporting us and “dealing” with the lows and the highs of our roller coaster life. And thank you for not making us feel an more guilty than we already do. Diabetes cannot be done alone. Thank you for being there for us.