As I attempt to control many aspects of my life and how others perceive me, I have placed a great deal of effort into trying to hide, or mask the pain that I am in from my children. I tell myself that I don't want to emotionally burden them with having to worry about me or even worse, having to hide their fears and concerns from me so that they don't "upset me" or appear weak. So I try not to complain when I'm in pain, I tend to overcompensate when I am feeling better, and I minimize the effect that fibromyalgia has truly had on my life. But as my children get older, understand more, and ask more questions, I am finding that I am not hiding as much as I think I am. In fact, I have come to the realization that my attempts to hide have been futile, as they know me better than I ever knew. I came to this understanding after I decided to put aside my own fears. I had to stop being fearful of robbing them of their childhood and being afraid that they may look at me differently. I had to be upfront and honest. I had to communicate with them directly, and not just talk to them about my condition and how if effects me, but rather LISTEN to them talk about my condition and how it effects them! So that is just what I did.
Doing so was a truly enlightening experience. As parents we believe that what we do is always in the best interests of our children, that they will understand our intent and motivation, and that they will be all the better because of our decisions. But sometimes, our children receive our actions, understand our intentions, and subsequently behave in a totally unexpected manner. This is because, as humans, we all have feelings and emotions that help translate what is said to us, thus causing numerous possible reactions to occur from one simple statement. Children are no different. So, I bravely engaged my children individually in a discussion about my condition and how it has affected their lives. What I learned touched me deeply and I decided to share one of those conversations so that it may encourage someone else to speak openly with their children.
The following questions and answers are from a conversation I had with my 11 year old daughter.
Q.What do you know about Fibromyalgia?
A. I know that it is an illness that you will live with forever and that it can cause other illnesses also.
Q. What do you think has changed about me since I have become sick with Fibromyalgia?
A. You're more tense and stressed about every little thing which sometimes causes more tension between the whole family. When you are upset that you cant get things done how you would like it you push yourself too hard. You are much more critical of yourself and put yourself down about being sick ask if it's your fault when it's not.
Q. How do you feel when I'm sick and can't get out of the bed for a few days?
A. I feel worried and sad. I sometimes feel useless because whatever I say or do won't make anything better. I worry because I don't know if you're going to get better or worse. I'm sad because I feel like you should't have to go through this. I hate it when you're in bed. I want you to be able to enjoy life, instead of spending your days in bed.
Q. How often do you think about me having Fibromyalgia and what are your fears (if any) about my condition?
A. I think about you and your health everyday. I know you say that you can't die from this but I feel scared that you will. I'm scared that you'll go to the hospital one day and then will stay there night after night and then eventually never come home.
Q. Is there anything positive that you think has come from my having this condition?
A. I think that because you feel bad about the bad days you have you try really hard to make up for them by spending extra time with us and doing fun things with us. It's great because I really love spending time with you!
If there ever were a time to have an entire box of klenex on hand this would have been the time!!!But instead of coming from our conversation upset that what I thought I was shielding them from I was not, a found myself delighted by the fact that I had a gained significant insight into what she was really thinking which has laid the foundation for how to go about interacting with her and communicating with her in future about my struggles.
Despite the ups and downs I face daily as I fight against this menace to my health, I find myself always searching for a way to grow better and stronger. I claim happiness in spite of my circumstances, and continue to focus on the positives to keep me encouraged. It is not easy, by any means. But being positive can truly make a difference!
I hope that this has helped someone, even if only in some small way. I would love to hear how other parents have addressed communicating with their children, as I still have a lot of room for improvement.
So until next time!
May God Bless Your Journey
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