If we have to suffer, lets not bring our children with us!

The children of people with invisible illness suffer quietly. As soon as my son, now 4, began to communicate, I tried to explain, in words that he could understand, why mommy was unable to play as much as he wanted me to, why I couldn’t stay awake longer than a few hours, and why I grimaced from pain so frequently. How can one explain to a young child, when this is his “normal,” that I wish things could be different for him? That he has done nothing wrong when I am crying. That sometimes, I desperately want to get down on the floor and play, but I literally CAN’T.

The guilt of raising a child under these circumstances is overwhelming. I often force myself to smile, play, and be strong for him. To walk him a mile and a half to the playground and back, only to lock myself in my room in tears of exhaustion upon arriving back home. To play catch, legos, playdoh, color… all of the joys of childhood, joys that take so much energy. Once, after putting him to bed, I left his room and immediately laid down in the hallway and cried; exhausted and overwrought with guilt. “I’m not doing enough. I can’t do enough. I will never be good enough for him.”

eBook and Paperback versions now available

eBook and Paperback versions now available

In order to help my son cope and understand my illness, I searched the far reaches of the internet for a childrens book on Fibromyalgia, chronic pain, or even just having a sick parent in general. I found absolutely nothing. Shocked and appalled at the void, I chose the obvious solution; I decided to write my own. At first, the plan was just to write this new book solely for my son. However, I could not stop thinking of the millions of other children in the same situation, and the other parents, as desperate as I was. I knew something had to be done to help those families feel less alone in the world, and give them hope. Thus began the saga of “Why Does Mommy Hurt?” Many people ask me how I managed to find the energy and time to write a book, while also living with chronic illness and raising a young son. The answer is… I’m not totally sure! I did have a big help in my TMS (Transcranial Magnetic Stimulation) treatment. Since developing my illness, I have suffered from depression off and on, and tried a myriad of traditional treatments for it, none of which helped much. A doctor finally recommended TMS, and the effect was fast and dramatic. For the first time in literally years, I felt like I could do anything; that I could contribute to the world, and my voice mattered. Two weeks after beginning TMS treatment, I finally begin preparations to publish the book, and I haven’t stopped working on it since! I also had help from my family and friends, especially my father, James G. Miller, who illustrated the book. His beautiful illustrations brought life to the book in ways that I never could’ve imagined.

“Why Does Mommy Hurt? Helping Children Cope with Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease” has been a best-seller for several months, and is available on Amazon.com and parentswithpain.com, in both paperback and eBook formats. It is a joyful, yet honest, portrayal of family life burdened with chronic illness, told from the point of view of a young boy learning to understand and cope with his mother’s Fibromyalgia and chronic pain. The story is told in a way that creates natural opportunities for the family to talk about both the symptoms of chronic illness (such as pain, frustration, fatigue, and memory problems) and how they affect family life. Even more importantly, this story puts power into the hands of the children in these families by validating and giving a voice to their feelings, explaining chronic pain in a way they can understand, providing a model for thinking and acting positively, and showing them how they could help a loved one afflicted by chronic pain. This book is appropriate for the families of young children who have a parent or caregiver experiencing any of a wide-variety of illnesses associated with chronic pain or fatigue, such as: Lupus, Lyme Disease, CFS, Depression, Fibromyalgia, Arthritis, Autoimmune Disease, Multiple Sclerosis and many others. It also includes a helpful “tips & resources” section for parents, which provides information and urls to support parents.

Available Now on Amazon and Parentswithpain.com/shop

Want to learn more?  See WhyDoesMommyHurt.com

Want to tweet this? Just copy and paste!

Childrens book on #chronicillness and #chronicpain, “Why Does Mommy Hurt?” http://wp.me/p4Cz8M-66 @parentswithpain

Elizabeth Christy

Elizabeth Christy is an author, writer, and IT professional living in Sterling VA. She lives with her husband James and 4 year old son, Jimmy. In addition to basic survival, Elizabeth enjoys reading, sewing, and nature. She also runs the nonprofit organization "Books and Bottles", which promotes reading to young children. (Facebook.com/booksandbottlesorg

This Post Has 4 Comments

  1. I LOVE this book. I bought the Kindle version ages ago and cried my eyes out reading it (in a good way!) Well done and thank you!

    I too am an ill parent. This isn’t how I hoped and dreamed my daughter’s childhood would be! The guilt is terrible. But I do think there are positives; we’ve got certain routines – games we play, regularly reading together at the beginning and end of the day (I manage it most days and just try to forgive myself for the days I can’t); these routines are very precious to me, and I suspect I wouldn’t have got into all of these routines if I was rushing out to work every morning. So I do think there are positives too – not that I wouldn’t take the chance of being healthy if given it!!

    Here (if you’re interested) are my thoughts on parenting while severely ill: http://cheeringfromsidelines.blogspot.co.uk/2014/08/parenthood-and-me-difficult-combination.html

    Thank you again for this book; a fantastic achievement for you and a brilliant resource for the rest of us 🙂

    1. Thank you so much! I’m so glad you liked the book. I’m so sorry I didn’t see your comment earlier. I also can’t figure out how to read the full comment(only part shows), frustrating! But thanks again 🙂

Comments are closed.

Skip to toolbar