I have lupus. My husband does not. Lupus affects both of us.
I've mentioned my husband, Daniel, in my blog posts before. He has been an amazing pillar of strength for me. So for Lupus Awareness Month–and my penultimate A Room With Books and Music blog post—I thought I'd let him share his perspective on life with lupus.
I've mentioned my husband, Daniel, in my blog posts before. He has been an amazing pillar of strength for me. So for Lupus Awareness Month–and my penultimate A Room With Books and Music blog post—I thought I'd let him share his perspective on life with lupus.
How did you feel when you found out your wife has lupus?
At the time, as hard as it was hard to hear it, it was a relief to know that she wasn't imminently dying. We knew there would still be uncertainty as we moved forward from the diagnosis, but it was a trememndous sense of relief just to know what we were dealing with. It's hard to put into words how frightened and helpless we felt before we knew why she was so sick.
How does being married with someone with lupus affect your daily life?
It makes the impact of my decisions a lot more real. If I watch a movie instead of doing chores, it can derail her for a week. I have to be more intentional about when I work and when I relax, so that we can both really relax. It also means I can't make as many time commitments as I used to. Even if Esther isn't involved in the activity, it can be hard on her if I'm not around to help when she needs it, especially if she's having a flare up.
It makes the impact of my decisions a lot more real. If I watch a movie instead of doing chores, it can derail her for a week. I have to be more intentional about when I work and when I relax, so that we can both really relax. It also means I can't make as many time commitments as I used to. Even if Esther isn't involved in the activity, it can be hard on her if I'm not around to help when she needs it, especially if she's having a flare up.
What has been your biggest challenge being married to someone with lupus?
I work full time and I'm pursuing a Masters degree part time. So balancing time between work, school, and home is definitely a challenge. I've had to really slow down the pace of my studies. And social activities with our friends are really kind of a luxury. We've both had a history of being over-involved with things, so we both had to learn how to dial it way down and help Esther conserve her "spoons."
I work full time and I'm pursuing a Masters degree part time. So balancing time between work, school, and home is definitely a challenge. I've had to really slow down the pace of my studies. And social activities with our friends are really kind of a luxury. We've both had a history of being over-involved with things, so we both had to learn how to dial it way down and help Esther conserve her "spoons."
What has helped you get through hard times?
Friends. Our faith community. People who have been there to encourage us and bring food to us and pray for us when we haven't even had the heart or strength to pray for ourselves anymore. I thank God for His people that He's surrounded us with. Our church family, my classmates and teachers, our coworkers, all of them have been amazing. I don't know how we would have made it through those first several months if it wasn't for them and their understanding.
Friends. Our faith community. People who have been there to encourage us and bring food to us and pray for us when we haven't even had the heart or strength to pray for ourselves anymore. I thank God for His people that He's surrounded us with. Our church family, my classmates and teachers, our coworkers, all of them have been amazing. I don't know how we would have made it through those first several months if it wasn't for them and their understanding.
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