Living with Chronic Disease: My Mom was Chronically Ill

Me and Mom, Summer 1996, less than a year before she died.

I was in 5th grade when my mom was diagnosed with Rheumatoid Arthritis. A few years after that came lupus.  She was often in pain and had low stamina. As the oldest child of four, I picked up a lot of the slack at home.

Dishes, vacuuming, taking my younger siblings to their activities- I felt like I was constantly doing "mom stuff", and often felt resentful. And there were scarey times, too.

I remember being 16, calling my mom from a friend's house to see if I could stay out later. On the phone, she was out of breath and I could hear the pain in her voice. She told me she was lying on the couch and was in too much pain to get up. I raced home to help her, my night out ruined. We spent the evening at the ER; she had broken a rib by coughing.

There were sad times, too. The summer before I entered high school her health had deteriorated so badly that my siblings and I moved in with our dad because mom was moving to Florida so her mother could care for her.

1994, High School football game

There are so many more good memories, however... She attended each and every football game I performed at as a Drill Team dancer.  She stayed up late one night typing my poetry book assignment in Junior High. Baking dozens of Christmas cookies every year. Her teaching me to crochet. Hearing her play the organ at church. The wedding dress fashion show she organized for my Girl Scout troupe. Her absolute devotion to the TV show "Dallas", but no other soap opera. She wouldn't drink coffee, only Constant Comment tea; but she still bought me a coffee pot for Christmas when I was 16.

My mother was very ill for many years before she died, yet looking back, I don't remember feeling cheated or that she wasn't a part of my life. Did I have extra chores in order to help her? Yes, so do my kids. Did I often have to stay home when she didn't feel well enough to take me to the mall? Yes, so do my kids. Was I raised to be responsible, independent, caring, and empathetic, in part because of my mother's illnesses? Yes, and so are my kids. For I am chronically ill, too.

Related articles

• Explaining Rheumatoid Arthritis to Children (everydayhealth.com)
• Two Doctors, Two Diagnoses: RA or Lupus? (everydayhealth.com)
• Rheumatoid Arthritis: Starting a Family (everydayhealth.com)