(photo credit: Becky A. Gardner Photography)
“I wanted to write a book that could open up a conversation between parents and children.”
- Elizabeth M. Christy.
Why Does Mommy Hurt? Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain or Fibromyalgia by Elizabeth M. Christy is a wonderful tool to help you talk to children ages 2-9 about your chronic illness and chronic pain. Accompanied by beautiful and colorful illustrations, the book covers the topics of pain, chronic illness, fatigue and memory problems. It provides positive, age-appropriate tips for children on how to express their feelings and what they can do to help. The book also includes tips for parents on how to continue the conversation, as well as a list of other resources. This is a must-have book if you live with chronic pain and have small children. Earlier this week, I had the opportunity to speak to the author of Why Does Mommy Hurt?
Elizabeth, 33, lives with fibromyalgia, autoimmune hepatitis and doctors are on the fence about whether she has lupus or mixed connective tissue disease. She is also the parent to a young child; her son Jimmy is turning four years old in June. “When my son started talking, he started asking questions about my pain,” Elizabeth explains. “It’s a difficult concept to explain to a two-year-old. Chronic is hard to understand for a small child, because when they get sick, they get better in a few days.” This was when she decided to write a book for Jimmy about her chronic pain. “Then I realized I could help others.”
She knows about chronic pain from both sides. Her mother was diagnosed with several chronic conditions when Elizabeth and her identical twin sister were 11 years old. As so many others at the time, the family didn’t talk much about the illness. “My sister and I had a lot of feelings of anger and frustration. I wanted Jimmy to have a different experience.”
Elizabeth met her husband James at James Madison University. “I knew I was going to marry him within five minutes. But we met young, so he needed a lot of convincing,” she jokes. Elizabeth started experiencing symptoms of pain and fatigue in her mid-20s and at first, her family didn’t want to believe that she was sick. “They thought I was worrying too much and afraid of having the same conditions that my mom had.” She was diagnosed with fibromyalgia at age 25 and at 29, shortly after her son was born, she received a diagnosis of autoimmune hepatitis and mixed connective tissue disorder or lupus. After an initial period of adjustment, her husband and family are now very supportive.
Parenting with a Chronic Illness
Parenting with a chronic illness “is awful,” Elizabeth says. “There are days when I don’t know if I’ll make it. The mornings are especially hard. I have to get my son up and I can barely walk. I take it one minute at a time.” She doesn’t regret having a child, though, in fact, she wants another one! “My son is the only thing that gives me hope and joy. He’s the reason it’s hard and he is what makes it all worthwhile. I wouldn’t change anything,” she says. Jimmy is growing up with skills that other children may not have. “He can pronounce fibromyalgia perfectly. He’ll say ‘sorry you’re sick’ and bring me a blanket or his teddy bear. I think he understands that we’re dealing with it.”
Getting to a positive place has been a process. “I had a lot of depression when I got sick,” she says. “I think anyone in that situation would get depressed. I had a lot of negativity, but it’s not valuable. There is a way to find a positive light.” Her advice to other parents is “don’t dwell in the future. I used to do that and it makes things worse.” Living more in the now has been very helpful to Elizabeth and she believes her chronic illness has helped her find a different perspective. “I’m able to bond more deeply with my son because I understand how precious these moments are.” She also recommends a solid support system and finding a schedule that works for you. Elizabeth is working part-time in IT. “I work Monday-Wednesday. Thursdays, I relax with Jimmy and recover from work. Fridays, I clean the house and go grocery shopping. On weekends, my husband and I take turns.”
Writing the Book
When Jimmy started asking questions about her condition, Elizabeth started looking for resources to help her explain chronic illness and chronic pain to a two-year-old. “I assumed there’d be a book to help kids understand, but I could find nothing.” And that’s when she decided to write her own book.
Given her own experience with depression, including tools for parents and children to find positive solutions was “critical.” Another essential part of writing a children’s book was illustrations. “All I can draw is stick figures,” Elizabeth says. Her father, also named James, had always dreamed of being an artist, but ended up in a “not very exciting job.” She asked him to do the illustrations. “There’s no way I could have done this without him. I’m so thankful he was there to help me. He says it’s one of the most wonderful experiences of his life, that he has finally achieved his dream of being an artist.” Elizabeth also wanted to include her mother in the process and dedicated the book to her, sharing the news this past Mother’s Day.
Why Does Mommy Hurt? Is a labor of love. When publishers did not show an interest, Elizabeth decided to publish a book herself, using a Kickstarter campaign to cover part of the costs. “I learned that I’m much stronger than I thought I was, that I can do much more than I thought was possible,” she says. It’s important for her to give back and to support fibromyalgia research, so part of the proceeds will go to the National Fibromyalgia and Chronic Pain Association.
Next on Elizabeth’s schedule is to build her new website Parents with Pain, including a community forum. She’s also connecting with artists to sell awareness jewelry through the site. Down the line, she hopes to write a book for teens about parents with chronic pain.
You can read more of Elizabeth’s writing on her blog The Potomac Falls Mama.
Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Published On: May 21, 2014