From Chronic Illness to Chronic Pain
A chronic condition
One of the most difficult side effects of sickle cell disease finds the word "chronic", which means "permanent". Do you know that feeling? Hmm, my child has a chronic illness! That is, my child will never get better... my child is really not getting better.
Defining chronic pain
After that, you will occasionally receive a few other chronic gifts without being asked. Recently I learned that my child probably has chronic back pain. Why chronic? Why chronic?! What is the cause? When is something called chronic? According to the doctor, such back pain that persists for more than 2-4 months is a reason to call it chronic.
When I search the internet for chronic pain, it says: Pain is a sign that something has happened, that something is wrong. Acute pain happens quickly and goes away when there is no cause, but chronic pain lasts longer than six months and can continue when the injury or illness has been treated.
Supporting my daughter
And then I thought for the past 10 years that I had already experienced the worst of sickle cell disease. No, it is not! This may also take a while. Now we need to start talking and thinking about chronic back pain, and what's next? "We do not know that! But we need to manage the pain, and maybe start looking for other ways to make her comfortable."
I still see myself defeated and quietly sitting at a small table with the doctor. I had so many questions, so many ideas, …..until the word “chronic back pain” came up. I was in shock, defeated, I didn't understand anything. We stick to all the rules, we try to avoid a pain crisis as much as possible, and yet it's not good enough! What else do we need to do to live a life without chronic pain?
The following days I walked around with so many questions, and then I was really “stuck” as a mother myself. I didn't know how to deal with it, I didn't know how to proceed and I especially didn't know how to be strong for my little princess who needs me and counts on me.
Psychologists, supports, and difficult conversations
In search of answers, I talked to my daughter's psychologist. The one who has been talking to her on a weekly basis for 2 years, doing breathing exercises, and teaching her to deal with pain, acceptance, and difficult conversations when I need help with that.
What do I mean by difficult conversations?
As a mother, it is difficult to emotionally “distance” your child. If your child is in pain, you are also in pain. If your child is sad, you are also sad. But that won't help your child. So I have the psychologist who sharpens where necessary and makes my princess a strong confident teenager!
I am sometimes amazed when I see how my princess handles her condition. It's so beautiful to hear and see a young beautiful girl talk about Sickle Cell Disease in such a positive strong way. And sometimes it's just funny to see how a child thinks. Maybe funny isn't the right word, but their innocence sometimes comes across as funny.
Why sickle cell? Why me?
The doctor once asked Miracle "Do you know why you have sickle cell disease?" and her spontaneous response was “Yes! So that I can't do everything!". The doctor asked, “What do you mean?”. To which Miracle said "So that I can't swim too long, for example, or run too fast." That was cute! The doctor actually meant do you know why you have sickle cell disease and clarified it, to which my daughter said “Ohhhh yeah! My mother and my father both have sickle cell in their DNA and then I have sickle cell disease”.
I thought that was a great explanation! Because she once had such a beautiful photo from a sickle cell lawyer with sickle cell genes and I explained to her how it works. She remembered it, and the beautifully framed photo taught her a lot.
The effect of chronic pain on a child
Back to the conversation with the psychologist about chronic pain. The psychologist explained the effect of chronic pain on a child's body and mental state.
New tools and perspectives
As a mother, I was given tools to look at my child in pain in a different way, to help her better, and to support her in a healthy and strong way at times when she is no longer able to do it herself. A frequently heard statement from my princess is “it's not fair mama! Why me?". When she was younger it was easier for me to come up with an answer to that, but the older she gets, the harder it is to distract her or give an answer that really helps her.
The conversation with the psychologist made me realize a number of things:
- As a mother, I have to accept that more challenges will come our way related to sickle cell disease.
- If you prepare your mental bit for what may come, then you are not always so defeated.
- Don't focus on the pain, try to think about other things with your child.
- Do not ask every 5 minutes how the pain is doing, because that is how you remind your child of the pain.
- You're doing well! Don't beat up yourself as a mother.
A helpful book
I was recommended a book that is exactly about this! I would recommend it to other parents who struggle with these emotions themselves. The title of the book is: When Your Child Hurts. Effective strategies to increase comfort, reduce stress, and break the cycle of chronic pain by Rachael Coakley.
Why is it important to read this book? From page 1 of the book, it seems like you are cozy in the psychologist's office with other parents who have the same questions and fears as you. The book is very easily written and makes you look at chronic pain in a completely different way and, even better, parenting.
I know what you go through as a parent, and I also know how lonely it can feel sometimes, but you are not alone! We are in this together!
Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)