Friday, February 14, 2014

Love -- In Sickness, not Health

Happy Valentine's Day!  I can't think of a better day to talk about how chronic illness affects my most important relationship: the one with my hubby of over 15 years.

Robert and I met when I was a freshman at UCLA in 1984.  He and I were friends in 1988 when I was diagnosed with leukemia.  While he didn't see much of my day-to-day struggle with month-long hospitalizations and chemotherapy treatments, he also didn't vanish like some of my other friends and family members did.

In 1990, when he first told me he loved me and wanted to go out with me, I freaked out.  Between getting dumped by a boyfriend one month into cancer treatment and trying to cope with the changes life after cancer brought me, I wasn't ready to start dating yet.  So I politely told him no.

Luckily for both of us, I changed my mind 5 years later when we reconnected and rekindled our friendship.

Today, looking back on our 15 years of marriage, I've just realized that I've been living with chronic illnesses severe enough to make me unable to work for almost 10 years now.  So 2/3 of our marriage has been with my sickness, not health.

I told Robert when we started talking about marriage that there was a *possibility* that my health could get worse. We both knew I had chronic Hepatitis C infection, yet ironically, that's not what has disabled me for the last 10 years.

And not even a year into our marriage, I was faced with a new health concern.  I was diagnosed with type 2 diabetes, which isn't causing me any serious problems at the moment, but does require a lot of effort on my part to manage it with diet, exercise, medications and follow-up medical care.

No, the big change happened in 2004 when a trip-and-fall accident started my journey with the constant, severe pain and debilitating fatigue of fibromyalgia.  That accident also worsened a pre-existing, but not yet diagnosed, condition that had been around since the end of my cancer treatment -- dysautonomia.  I've also developed new health problems, like sleep apnea, which is associated with fibromyalgia. Honestly, chronic pain makes all my other health problems worse, in various degrees, and makes managing them all more challenging too.

The other day I read a poster that said, "It's true that pain changes people. Not everyone knows this, not everyone sees this truth. Pain makes you let go of things you'd rather be doing. Sometimes it's OK that the only thing you did today was breathe. Pain changes you.  But it can also make you stronger."  Well, Robert's had an up close and intimate view of all the ways that pain has changed me...and he's seen a lot of unpleasant, undesirable and uncomfortable things in the last 10 years. 

Let me be frank and to the point.  I'm less frequently my cheerful self when my pain, fatigue and sleep-deprivation are at high levels.  I need more help now and Robert is the one around who can help me.  As much as I plan, pace, schedule, restructure activities and rest, my ability to participate in life's activities, from mundane daily chores to fun special events, is highly unpredictable.  No wonder my hubby gets irritated with me, or rather my chronic illnesses, sometimes.

My chronic illnesses don't just effect me physically; chronic illness affects my concentration and memory too.  Brain fog makes me forgetful, even when he just told me what he needed me to do.  Try asking for help when all of a sudden you can't remember the word for the object you need your spouse to bring to you!

If I fall apart, physically, mentally or emotionally, it is Robert who is usually there to witness it.  If I have a bad day, it impacts him the most.  If I am in a really bad mood, he's most likely to caught up in it.  If I can't do something, he's the one that will have to do it instead.

Yes, we have avoided being part of the statistic that shows 75% of marriages in which one spouse has chronic illness end in divorce.  But no, our marriage hasn't always been easy.  Ask Robert and he'll tell you we've had more than our fair share of bumps (or mountains!) in the road. 

How have we done it? I think being friends for 14 years first and then dating, getting engaged and married helps.

I try to always be polite when asking for his help and grateful for the things Robert does for me. I try to tell him thank you frequently.  I've learned to take a "time out" and retreat from his presence if I am really out-of-sorts.  And I take the time to explain what is going on with me, often multiple times, until he really seems to understand.

Between explanations and witnessing my behavior over the last 10 years, I think he now really knows what is up with me -- sometimes better than I do!

One thing I've needed in the past several years is his help driving me to doctors' appointments.  I have to say going to my appointments and being in the examination room with me has really been an education for him!  He is now very annoyed that all the medical doctors and all the medical specialists can't put his wife back together again.

Finally, one thing that is both endearing and frustrating to me is his insistence that I do as much as I can myself.  His urging is a good reminder that there are activities and better days when I can still do things without his help.  Of course, when I need his help and he can't see that, it's quite frustrating.  But I think it shows that he hasn't given up hope that one day I'll be the Selena he fell in love with again. 

I hope some day I can get better too, for myself and for him, because living and loving with chronic illness makes it hard for both of us.

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Unknown said...

I can totally relate to this. My husband and I have been married for 20 years and have known each other for 24 years. 23 of those years I have been sick. Sometimes less so, sometimes more so. He once told me (before we married) that he didn't want to be with a chronically sick partner. Well he got what he didn't want...in that way. On the other hand he is my biggest supporter. Always complimenting me on my courage to try new things and how I keep in working to find ways to keep myself as healthy as possible despite autoimmune challenges! There isn't a day that goes by that I don't remember and express my gratitude for his presence in my life! I am fortunate to have this partnership. It's part of one of the 'silver linings' in my life. Thanks for writing on this topic.

Unknown said...

What a wonderful post for Valentine's Day!

Unknown said...

I got a husband like yours. I think we r pretty lucky:)