Not So Invisible Anymore?


My daughter Christine has, what is sometimes called, an invisible disease. Though she looks teriffic most of the time, she has suffered, for over a dozen years, with the debilitating and painful symptoms of Lupus. It’s become an inside family joke when people commented almost incredulously- “but you don’t look sick.”

In recent weeks Chris has been in the throes of her worst flareup, causing neurological problems. Beside the normal pain and swelling, she has been unable to feel her feet and thus unable to walk unaided. Prior to this episode, we had planned a family vacation to Nashville and were concerned if Chris would even be able to make the trip. With her doctor’s consent and armed with a cache of medications and heating pads, Chris decided to attempt the trip with the help of a wheelchair.
For the first time, Chris’ invisible illness was not so invisible anymore. It is also the first time that we had to deal with the logistics of finding elevators, handicapped bathrooms, sidewalk ramps, etc. Both she and I began to notice things that we never really took notice of before. She mentioned that she suddenly was aware of how dirty bathroom floors looked, perhaps since she was now so much closer to the ground. I immediately noticed the rush of people as they walked past her, hardly realizing that she was there. When you carefully maneuver a wheelchair around throngs of travelers in an airport you become aware of how much everyone is rushing to get somewhere.
Though we encountered some people who stared at Christine, a young pretty girl in a wheelchair, most of the people we met went out of their way to be helpful and accomodating. They held open doors, stepped out of the way and guided us towards elevators. Perhaps I was reading into things, but I perceived people to! be even more friendly toward Chris, bundled under her blanket in her wheelchair. They seemed to go out of their way to extend themselves. At The Grand Ole Opry, the guard helped my son maneuver our van out of a lane packed with tourist buses and at the Wax Museum Chris was even given a free admission to get in- he said because she was young, I think because she was cute.
I was grateful for every kindness shown to us, since it made our trip run a little more smoothly and it made it easier for Christine, but it also made me wonder. Why are we quick to extend compassion and patience to those who only look visibly sick or in pain, yet we forget that there could be strangers and even family members among us, who might be silently suffering with either physical or emotional problems. If Chris were not in a wheelchair, if her lupus was invisible, how many doors would be held open for her, how many people would lose their patien! ce over her slowness? I guess we all need reminders to slow down and extend simple everyday kindnesses to each other.
I remember when Chris was in highschool and she felt too tired to complete her homework assignment, I told her to explain to her teacher that she had Lupus and was not feeling well. She said, “Mom people only believe what they see.” Because Chris had always looked healthy, there had been an element of disbelief or at the least a lack of understanding of her illness and her very erratic symptoms. Unfortunately, as we now toured Nashville, Chris had a very visible sign of her illness- the wheelchair she couldn’t manage without. I am grateful for all the people who went out of their way for us and I will try to remember to pass on the patience and the kindness to others.
Article written by: Janet Miserandino,, © 2006

  • Tinky2

    My mom is very very good to me also. I can be quite a handfull when my illness takes over. At this point a trip is to the Doctor usually takes 1-4 hours round trip depending on which doc I’m seeing. She is always prepared with pillows blankets and anything else I need. My husband still seems to be trying to understand. After 23+ years he should get it. But he dosen’t at times.

  • Amy Hyatte

    I wish I had anyone who was that compassionate in my life.

  • trisha mcdonald

    i wish i had your mom.