When My Fibromyalgia Means My Kids Have to Grow Up Faster

“Amma, why don’t you come to all my baseball games?” “Amma, why do you sometimes stay back in the room when we are on vacation?” “Amma, why did you sit out the hike after our kayaking trip?”

These are some of the many varied but similar themed questions my boys ask me. My answer is always, “Maybe next time dear, because right now I am hurting/am in pain.” My boys Vid and Vish are 12.5 and 10, and I recently realized, ironically, while writing my last post on explaining fibromyalgia symptoms, that it has been 10 years since I got my official fibromyalgia diagnosis (of course the symptoms started much earlier). Which means my boys have always seen me in chronic pain and never knew me in my healthier days.

For the most part I have made my peace with fibromyalgia pain, as in I know that the pain is a constant in my life and that I have to work around it. But I really hate the feeling that goes through my mind when I feel that I have failed them somehow as a parent. As parents, we always want to be there for our kids, for their every step, every milestone, every meeting, every game, their highs and lows, and most importantly, we want them to be kids for as long as they possibly can. What I absolutely hate about fibromyalgia is that my kids have had to grow up faster due to my ever-present pain.

Yes, I can hear you my friends, that I am doing the best I can and that’s all I should do, but it still kills me. When they were younger, I gave them a somewhat broad explanation of what I am going through and because they were younger, they really didn’t have a lot of questions, but they always sensed that I was sick, saw me at my worst when I was going through withdrawal symptoms and comforted and helped me out in their sweet ways.

Now that they are older, they worry that I am in pain all the time, and sometimes they feel hurt when their mom is unable to actively participate in certain things or when she loses her cool due to the pain and then feels miserable afterwards. But their questions have also changed. Vid and Vish wanted to know the duration of a flare-up and when I told him it is multiple days or sometimes weeks, they felt so bad that they gave me a tight hug with tears in their eyes. They also needed more information, so I showed them lots of photos online of how the pain feels, where the pain is and how it travels. To say that they were shocked and devastated would be an understatement.

This week particularly has been really bad with a severe flare-up and I was talking to my husband about sweeping the living room as we had really dragged in a lot of dirt. He told me to leave it and that he will do it over the weekend. What I didn’t know at that time was Vid was listening in on that conversation. After lunch, I told the boys I wanted to rest for a bit and when I came down, Vid had just finished sweeping the living room. He said in his matter-of-fact way that he heard me talking and it was just something he wanted to do to ease the load off me. Similarly, Vish helped unload the dishes from the dishwasher and put them away. He has taken up the dishwasher unloading as his job. Can you imagine how I felt that evening?

There are lots of us who are taking it one day at a time with fibromyalgia pain and we do, if I may say so myself, do a good job of taking care of our children and making sure they have a semblance of a normal life. But when we get hit by a long and painful flare-up, we have no choice but to put ourselves before them. And it is during those trying times one has the opportunity to see the resilient, responsible, resourceful and the empathetic nature of their children.

Granted, there are times when I feel so overwhelmed that I feel like I messed it all up, but I guess all of us, whether we are ill or not, feel that way. And I just have to let that feeling pass, like how I always wait for a flare-up to end. All I know is I will love my boys even when they mutter “Mom…” (while rolling their eyes at the same time), try as much as I possibly can to do everything I can as their parent, be open with them about my health and answer their questions in the best possible way and just be there for them always (even if they don’t want me to), just in case they need me for something, as I have learned that:

“There is no such thing as a perfect parent. So just be a real one.” — Sue Atkins

A version of this post first appeared on LGV Blogs.