Friday, February 11, 2011

Does Chronic Illness Define Us as a Couple?

I have a picture of a 25 year old woman with long brownish blondish hair dressed in a flattering black dress standing next to a 33 year old man dressed in a polo shirt and slacks. He has his arm around her and they look so healthy, happy and in love. This picture was taken five and a half years ago. It was the first time I took George to Kentucky to visit my parents and we were on the roof top of a fancy restaurant. I sometimes find myself lost when I look at pictures like this one.  I struggle to remember who George and I were then and what our relationship was like. The shadow of chronic illness has been over our lives for so many years now that it is hard to remember us then. If I have trouble remembering who we were before, does this mean that chronic illness is all we are as a couple? Does chronic illness define George and me?

I met George while volunteering at our church's food pantry in August 2004. We started dating in March 2005. Our first kiss was on a bench underneath a gorgeous willow tree. George proposed in October 2005.  As a couple, we often argued who was nerdier. Was it me with my Star Trek Next Generation addiction or George with his Star Wars fascination?  We could usually be found taking walks outside. We spent a lot of time with our friends and went to church twice a week.  And we loved going to Richard Walker's for George's favorite meal of the day: breakfast. In fact, the morning of the day he proposed, the waitress at Richard Walker's commented on how wonderful it was to see a couple so in love.  Migraine disease hit me in a severe and disabling way ten days after we got engaged. I was hospitalized twice during our 8 month engagement and lived with my parents in Kentucky for almost 2 months as I was too ill to be taken care of at our home by George who had to work full time. From the day that Migraine disease hit, George became a caregiver and I became a dependent partner. We have operated like this much longer than we ever operated as a "normal" couple.

Having a caregiver/dependent relationship changes and sometimes trumps the husband/wife relationship we have.  When a severe Migraine or Meniere's attack hits, George steps in and does everything I would normally do around the house and more. He is a very compassionate caregiver in that he wants to make sure I'm as comfortable as I can be and attempts to meet the needs I have.  When I had a healthier eight month spell in 2010, it was actually a struggle to learn how to be a husband and wife. In our whole marriage, I had never been that healthy and we both had to figure out how to navigate and adjust to a new dimension. George would clear my plate after dinner and I would get irritated because I did not need nor did I want him to do that anymore. As I said it was a learning process for the both of us. Chronic illness had/has determined how we interacted with each other.

As a couple walking through chronic illness, we don't spend as much time with friends anymore as it is difficult for me to go out or to even have people over very often.  Going to church as a couple is a luxury that happens all too infrequently because the sound is unbearably loud even with ear plugs. We still try to go out to breakfast when I'm having an okay morning. In the summer time, a walk, even a short one to the mailbox and back, is a bookend to our day. We still indulge in our nerdy sides as he watches Cartoon Network's "Star Wars: The Clone Wars" every Friday night. And as I often have trouble falling asleep due to my pain, we play Star Trek Next Gen episodes on the tv to lull me to sleep.

Because chronic illness puts so many limitations on my body, we don't do the typical couple activities such as going out on date nights or to the movies. However, these limitations help us appreciate the little things and I believe we enjoy them more than the average couple might. When my head can tolerate it, we sing songs while we get ready for the day. Even though George sings way off tune, we still have a blast.  Impromptu dance sessions in the kitchen are a frequent occurrence.  We make funny faces in the bathroom mirror and laugh at the dogs' antics. Chronic illness has taught us not only to search for the little joys in life but also to be more positive about life. When we make plans for something like a vacation, we always have contingency plans set up. And if we have to use plan "b" or "c" it is not a disappointment...just a different plan we get to enjoy.

I have always struggled with the thought of my chronic illnesses defining who I am as I wrote about in my post taking ME out of MigrainE, but not until writing this post did I realize how much it also could define George and I as a couple. But, no, chronic illness does not define us as a couple any more than it defines me as a person. It is part of the journey we are on that has shaped our path and our experiences, but deep down we're still the same nerdy, fun-loving, goofy couple we always were. The essence of who we are remains. And even though I sometimes have a hard time remembering some things about George and I pre-chronic illness, I am thankful to realize that chronic illness is not who we are.


  1. I agree that we cannot let our disease define who we are. Either alone or with our loved ones. It may control you at times, but it will never be you.

  2. I to have Miniere's Disease and Migraines. I found your blog thought PFAM's blog carnival.

    I understand your post all too well.

    My husband and I try to have times when we can focus on each other as just husband and wife, and not as caregiver and patient. It's hard, but I need to have that separation some times.

    He is a wonderful caregiver, but I never want to forget that he is also my darling sexy husband.
    I was having trouble with that for a while, but we are working hard on it. And I think we are doing much better at paying attention to us, instead of putting my disability in the forefront all the time.

    I'm glad I found your blog.