understanding more.

My husband just got back from a long vacation with friends. For a number of reasons I didn't join them on their adventure. Some of the reasons are just regular reasons around schedule (I needed to be at work at the time they all could get away) and preference (8 people in a condo isn't exactly my idea of fun) and energy (lot's of plane rides and lot's of time to get there). Check and check. The other reasons were more diabetes related, having to do with ability (I can't scuba dive as a diabetic on the insulin pump) and reticence (I've had bad experiences in the past with people around being seen as pushy and a drag because of the schedule and regimen I need to follow with food and exercise) and a general lack of energy around a big vacation like this one (to plan for all the details of travel and all the unknowns of a new place). And then of course, there was the ever-present fact that I didn't want my diabetes to stand in the way of his fun. I hate that idea and worry about it quite a bit. How to navigate a partnership in light of the unending presence of diabetes is at times challenging. Not insurmountable, but definitely challenging. Like vacations for example. There's more to think about in our case than when you don't have a chronic illness to deal with, that's for sure. In the end, all of this added up to us deciding that he would go and I'd stay home. On paper it made sense, but like so many things, the plan and the experience can be very different.

Throughout the 10 days my husband was away, I found myself vaguely angry and uneasy. It honestly wasn't that I was angry at him. No, it was something else, but I just couldn't put my finger on what. Which didn't make sense to me. We'd talked about it and we'd decided that this was the best solution. What was the deal then? Why was I so out of sorts?

When he returned we sat down and talked about it all. No anger, more from a healthy curiosity and mutual desire to make it better. After much discussion, what it basically boiled down to was 2 things. Hurt and fear.

In the first place, I felt left out, pure and simple. Off they went without me, doing stuff I couldn't do, checking out in a way I could never check out. They were able to not only take a vacation from the daily grind, but also a vacation from diabetes. A vacation from diabetes. Wow. The idea is almost unimaginable. It was something I want so profoundly and something I can never do. I so wanted to be a part of their group instead of mine. Yep. I felt left out in a big way.

The second thing we discovered in our discussion was that I also felt afraid. I was afraid that if I'd joined the group, in a circumstance that required them to spend 10 days with me and my diabetic life, they wouldn't have understood and consequently wouldn't like me anymore. Worse yet, I feared that my husband would decide that life was so much better without having to deal with diabetes on a day to day basis, that he too wouldn't like me anymore. Given the choice to live with diabetes or not, I could imagine a person, even one that loved me, running screaming for the door.

And it's not like my fears are unfounded. This has happened to me before. It's been a long time since then but the memory of it's devastating impact on me is clear and sharp. Until my husband and I talked about it though, I didn't realize how much it was still impacting me. I thought I had moved on, but clearly I hadn't. Even though this was a new day with new players and even though my husband wasn't this other man, I was projecting my painful experience and consequent fears on this present event. Ok, so now I understood a bit more about what was going on here.

Wow! It felt like we found a diamond of an insight. Hard but precise and in a strange way, beautiful. It's an insight that both my husband and I can work with. Diabetes and the fear of rejection. That's not one you read about in the manuals you get from the doctor. No that's one you don't expect to have to experience on top of having a disease, but unfortunately you can. Being different, being misunderstood, being seen as difficult or selfish or demanding when you're actually taking care of your disease, can have real and profound ramifications. Trying to balance the desire to fit in and the need to take care of yourself, can develop into a real reticence to try new stuff or risk joining in again. Feeling safe and understood isn't easy with this disease. It takes a lot of explaining on my part and a willingness to listen on the part of others. And this experience has taught me that sometimes even I don't know what's driving my feelings. In that case, how can I give people the clues they need if I don't see them myself?

So what we're going to do after all this, is take some time to figure out the best vacation that works well for us both. Something that will be fun and relaxing and healthful and easy. And yes, something that might stretch my comfort zone a little in terms of adventure and unknowns. We're going to talk about it more beforehand and not make assumptions without checking in with each other. With a little effort and a little exploration, we're going to go on a vacation. Sometime soon, some relaxing fun will be had by all. And I can't wait!

This experience reminded me, yet again, that living my life with this is disease is a process. A journey, as a person coping with a very difficult and complex disease, as a person dealing with all that is not understood by others, as a person so vulnerable to the vageries of this disease and in turn, the kindness of others. A kindness that is demonstrated to me every day. And a kindness that sometimes isn't demonstrated and can boil down to insensitivity and cruelty. In the end, it's a process of searching for and finding a few safe people and a place to just be. In the end, it's about learning and trusting and starting over and building and taking care. Of myself, my relationships and my health. For me, that's the best I can do.

Comments

[Scott K. Johnson]

You know, I bet it took a great deal of energy and motivation on your part to work through all of this. I believe that is why many of us take "the easy way out" and just be content to be uncomfortable with those we love. I know I'm guilty of that, at times, and hope that I can summon up the courage to explore where all of that is coming from next time.

I also think there is a lot of this that happens with young kids and teenagers. I was diagnosed at the age of five, and can remember a few crystal clear moments in my past where I was being picked on and such. I know others have talked about it too. This happened to me more so in my teenage years. I think that teenagers in general are struggling to figure out life, and do not have the grown up wisdom to explore all of these vague and unfamiliar feelings. It's a tough thing. I imagine it is excruciatingly painful for parents to watch too.

In the end it hopefully adds up to some additional resilience and character, but I can sure identify with the "uncomfortable-ness" of it all.

Another great post. Thank you.

[Kerri.]

Brave, honest, and forced me to look harder at myself.

Thank you for writing this. Your honesty resonates in ways I can't convey.

[AmyT]

Wow, Birdie, once again you have touched me. We travel all the way to Germany with our 3 children every summer -- which I realize some may think is a luxury, but for me it is an obligation and a chore. It is physically and mentally exhausting. And my husband just goes on thinking I'm "doing such a great job with my diabetes," he can't understand why this trip is such a big deal for me. But it is. A big deal. And I realize that I feel resentful, because for everyone else it's just fun. For me, it's work. Not a vacation. Certainly not from diabetes.

[Minnesota Nice]

Gosh, Birdie. Sometimes I don't even take an evening walk with a neighbor because I don't want to slow anybody down if I have a hypo.........
Thank you for being so honest and putting those vulnerabilities out front. I have been on the dating scene for 30 years and lately have found it easier to say no rather than risk being rejected because of the db. It's so easy for me to think of myself as "damaged goods". Yup, everybody else went out and had fun and I stayed home with my diabetes.
Sigh............
Thankfully, you and your husband have good commnication skills and can identify the problem and then work toward resolution. He sounds like a good guy. You are lucky to have each other.
Happy Thanksgiving1

[Amylia]

Birdie,
Thank you for this post. Again, it echoes so much of what I feel inside, too. Fear of rejection, fear of abandonment. I have these things deeply inside myself. I am proud of you for having the courage to talk to your husband about all of this and not just shrug it off and let it be.

To this day my own mother still comments on how my life "revolves around food" and how she forgets that she "needs to slow down" and let me eat because of being diabetic, taking things slower is something she doesn't like to do. She says it in such a way that makes me understand, in part, why I have body image problems and a warped way of looking at food. If my own mother can't accept me, how can another?

Also, I think it's why I love taking a vacation with my twin sister--also a diabetic. We don't need to explain or worry about others. We get it.

[Bernard Farrell]

Birdie

Thank you for such a thought provoking post.

It does make me think that it would be fun to have a diabetes camp...for adults. (Where all the food was great and was clearly labeled with carb count and other important info, and where all the diabetes supplies were taken care of.) Everyone there (including 'staff') would have Type 1 diabetes. That'd be a lot of fun.

[Amber]

Hi, I just found your blog and am blown away. This is a great post. I think so many of us can relate and yet never write about these things. Thank you for writing about this!
Is it okay if I add a link to your blog on mine?

[June S.]

I just read this:

"It does make me think that it would be fun to have a diabetes camp...for adults. (Where all the food was great and was clearly labeled with carb count and other important info, and where all the diabetes supplies were taken care of.) Everyone there (including 'staff') would have Type 1 diabetes. That'd be a lot of fun."
I'm a 51-year-old Type I, diagnosed at age 16 and with no complications as yet. I DID have a wonderful diabetic vacation experience in 1994, when I went with Dr. Jean-Jacques Grimm to Switzerland. I had met Dr. Grimm through what was called, in those days, the International Diabetic Athletes Association. That organization has changed its name, but just Google it. You won't find Dr. Grimm there, but you'll likely find other diabetics to vacation with - maybe even in a group. Good luck!

[Rachael]

Thanks for the information...I bookmarked your site, and I appreciate your time and effort to make your blog a success!