Friday, September 18, 2009

Fact of Life #5: Denial (No, not theirs, yours!)

People talk a lot about "denial" when they talk about diabetes... about how the PWD in their life doesn't take care of themselves, how they pretend the diabetes doesn't exist, how they do whatever they want around their disease... and so on, and so on. We've heard it - and talked about it, with friends, family, doctors - many times before.

But how many times have we actually stopped to look at the flip side of that... at the fact that we as spouses, partners, loved ones of the PWD may actually be living with a form of denial all our own?

I think it is true of anyone who lives with and loves a person with diabetes, that there are many moments of
wishing that the diabetes didn't exist or was gone magically (poof!) one day. For me it is a matter of wishing I could take it all away from my husband, so that he could go back to those carefree days where he wouldn't have to think about, worry about, or deal with those diabetes ups and downs on an hourly basis. Of course I don't share this feeling with him (until now, that is!), because unfortunately - as we all know - just wishing the diabetes was gone doesn't make it so... or make it productive, so I just push that notion back under the rug from whence it came.

But I wonder sometimes if that desire to have the diabetes "gone" creates a unique type of denial for me as a spouse ... something I would term the "No-Big-Deal-ness" that I find myself feeling or communicating to other people around my husband's diabetes.

As a spouse, I think that a certain level of "denial" of the disease is healthy ... in order to keep the diabetes in its place and not allow it to rule, or define, our lives. However, I've also come to realize that there are times that I find myself in that different kind of denial... the one where even though I recognize (of course) that the diabetes is there, that it is not going anywhere, that it is a fact of our lives, I still find myself thinking "it's not so bad ... and because it isn't bad now, it never will be. Ever, ever, ever."

I know I am one of the lucky ones - my husband has had type 1 now for 12 years, with no complications and only a handful of serious low episodes. He is very proactive in his care - wears a pump, checks his numbers many times a day, counts his carbs, sees his doctors and has his A1c checked regularly - and I am always awed and grateful for how well he does all of this.

In a way I think his good management of the diabetes has facilitated my unique form of denial ... not to put any blame on him of course (who wouldn't want a spouse who takes care of business?!), but I almost feel like the fact that his diabetes has remained largely "invisible" has allowed me to lull myself into that "no big deal" denial.

For others whose partner's may not be taking as good care with their diabetes, and may in fact be in denial of their own disease, it may be a realization that you too are somehow a "partner in crime", abetting your partner's denial with your own participation in, or encouragement of, things that are less than optimal for your loved one's daily management... that regular trip to the ice cream store? Getting upset with your partner with the disruption that checking blood sugars or treating the diabetes makes in your daily routine? Making it difficult for them, and for you?

Regardless of how we got here, I'm starting to think that this type of "no big deal" denial isn't a great place for us to be.

People have shared with me that one of the worst experiences for them as a spouse of someone with type 1, is finding themselves "unaware" and unprepared for a diabetes-related event. For some it has been the onset of a complication where there didn't used to be one - for others, the first call to the paramedics for a low that couldn't be reversed. And for others who have spouses who have lived with diabetes for many years, it is the worsening of an already existing complication to the point where it truly begins to become a part of their daily lives in a way that cannot be denied.

How do we prepare ourselves and open up the "can of worms" of feelings around our partner's diabetes that our current denial - our it's "no-big-deal-ness" - protects us from? How do we come to terms with our loved one's disease and give it a place in our lives... a place that respects it for what it is, yet empowers us to stay in control of our emotions and reactions to it?

Here is my take on it - I encourage you to comment and give me yours:
  1. Be realistic - Get the information you need to know what you're dealing with. Where is your partner's diabetes at? What challenges do they have right now? Learn as much as you can, both from your loved one as well as from others in your diabetes network, and let that frame what you think (and what you feel) about where the diabetes is and is likely to go in the near future. In this case, what you don't know can hurt you (and your partner), so now's the time to get real. It's the only way that you can be on the same page with your partner.

  2. Get angry or sad if you need to - Once you know what you're dealing with, it's natural to feel sad or angry or both if the information is not what you were hoping for. You may run the gamut of emotions - from fear, to loss, to anger at your partner, to relief if the news is better than you expected. Regardless of what it is, I think it is critical to really stop and feel the feelings you have around this. You may or may not choose to share them with your partner - however, it is important to find someone to talk about it with, to get it out in the open. Empower yourself by acknowledging and addressing your feelings head-on. Burying your head under the rug never helped anyone!

  3. Accept it - This is a biggie, and it takes time. The goal is to get to a place where you feel "okay" with the truth of your spouse's diabetes, and you know your role and are comfortable with it. You don't feel the need to downplay (or dramatize) the diabetes, but are realistic with where it is and where it is going. You recognize the possibilities (good and bad) in the future, and have thought about how they might affect you (and how you might respond). You've come to a place where the diabetes just is in your life, and you're okay with that.

  4. Partner Up and Move on - I think that more than just accepting our loved one's diabetes, we need to feel the ability to partner with them and move past it. This may mean figuring out a way to have the disease in your life, but not having it BE your life.... having those life strategies and "plan B's" that you can implement if things go south, and not being unalterably shocked or affected if diabetes-related events surprise you. It means having some resilience, together as a couple facing the disease and moving forward. Living well with the diabetes ... both of you.

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