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How Lupus Changed the Dynamics of My Marriage


10:38 p.m. finds me alone in my room. My husband is downstairs sleeping on the couch. He has got to be unbearably uncomfortable, given both built-in recliners are stuck in their reclined positions. I should know. I nap there almost every day on purpose so I don’t sleep past time to make dinner. Right now, he is there and I am here because we just had a nasty argument.

Out of curiosity, I started looking up divorce rates among the chronically ill. I was hoping to sound really intelligent with some insight into the statistics. I didn’t find any solid enough to quote. They varied too much. Alas, I shall have to focus on myself and my husband, and leave the intelligence to the marital experts. Considering where my husband is currently located, I don’t qualify anyway.

For two decades, we had what I believed was a solid, almost perfect marriage. We had our ups and downs like most, but we were deeply in love. Only twice did we come close to calling it quits. We fought through those difficulties. We aren’t over yet. This dispute is but a bump in the road.

Lupus is the crater in the road. It has significantly changed the dynamics of our relationship.

The medical expenses are a huge problem. With me unable to work and not making nearly enough from my writing (yet!), he has taken on another job. Don’t most couples argue over money? We sure do.

Painkillers. When I need them, he gets concerned that I am unable to think clearly. As a result, I feel like he treats me like a child. That irritates me so very, very much.

Household chores. He and the kids do most of them. When I am doing well, I try taking over the laundry and the cooking to help out. You know the old saying, “Too many cooks spoil the soup.” He likes things done his way, and I like things done my way. Yep, this is a pride thing. Before lupus, I did all the housework, so this wasn’t an issue. How I miss those days!

Who’s minding the children? Kids have extracurricular stuff in the evenings. By then, I am pretty exhausted and ready for bed. We don’t want them missing out, so he has taken that over. As much as I don’t like seeing my children grow up too fast, this is one issue with a visible light at the end of the tunnel. Child number one is already on his own, child number two is heading for college this month, and child number three is the only one left with a predictable basketball schedule. Whew!

Canceled plans. I’m not the only one around here who feels bad when we have to cancel on others because of my health challenges. It’s tough on him, too.

We no longer feel like equal partners. This has become a doctor-patient relationship. We fight and fight against that. Still, it happens. Even the kids do it to me. I have caught my daughter checking my pill case to make sure I remembered to take them all. My husband has some medical background, so taking him with me to appointments can be really unnerving when he and the doctor start talking over me using terminology beyond my level of comprehension. More than once I have had to remind them that I am the patient and am still in the room.

What was so important that he is on the couch? The toilet was plugged and the hot water heater was out of hot water. He was too exhausted to deal with them, and I was in more pain instead of less from my cold bath. This was a no-win situation.

If we want this marriage to work, then we need to remember there is no such thing as “I’m right and you’re wrong.” Before either of us asks each other, “Do you hear me?” we need to ask ourselves, “Do I hear you?”

Excuse me, please. It’s time for me to invite my husband to come sleep in our bed. Goodnight!