If you have a chronic illness like Fibromyalgia, I'm sure you've felt the weight of "chronic illness parent guilt" because you couldn't keep up with the energy of your child, or you've had to cancel plans with a partner, family member, or friend due to a flare-up. Unfortunately, it's just something that we all have to learn to adapt to, and more so, we all have to learn to accept. I've said a million times throughout this blog, that we have to learn to let the guilt and frustration go. I know, I know. That's easier said than done. Especially when you're trying to parent children when you're chronically ill. You're not alone in your feelings. Many of us that live with chronic pain and fatigue illnesses, have experienced every emotion you're going through.
Not only have I talked with hundreds of people within our Fibromyalgia and Chronic Illness communities that goes through this Chronic Illness Guilt in general, but I've experienced it SO many times myself personally on just about every single level. Ditching out on alone time or a date with a partner. Not being able to give 100% to a task that my elderly parents need help with. Having plans with a friend, and then having to cancel the day of, because you just don't have the energy within you or you're in too much pain. It's' easy to just "shut down" in those moments. I'm so guilty of that myself. If I'm feeling sad, or down, or depressed, or inadequate, I tend to revert into myself and just kind of shut down and shut out the "outside world".
When my kids were little, I didn't know that something was "wrong" with me. Of course I knew inside me something was wrong, I had known since I was in high school. But I didn't yet have a diagnosis. I can't tell you how much I wish I had known what it was so I could try to explain it to my four children when they were still little.
On days that it was hard for me to even get out of bed, get dressed, get the kids fed and dressed, etc I felt soooo bad and guilty when they'd beg me to play tag with them. Or take them to the park to chase them around, push them on swings, go down slides with them. I was just too exhausted. My entire body ached. Again, I didn't even have a diagnosis! I finally was diagnosed with Fibromyalgia among many other chronic illnesses when my youngest child was around 14, maybe 15. My oldest daughter would've been around 18 or 19 and in college.
There are so many alternative activities that you can do with your children, besides all of the running and jumping and playing hard. You have to realize that if you're chronically ill, you're going to be sick off & on for the rest of your life. I know, that's a hard pill to swallow. For someone that's a stubborn mule like me, it can be hard to accept. It took me seeing two different doctors, still not accepting it so waiting close to 4 months to get a new doctor, this time at the Cleveland Clinic with a world-renowned Rheumatologist, a battery of tests ...imaging, blood, and many pushes, prods, walking for the doctor, etc before I finally believed them that I indeed have FMS. It was my doctors belief that FMS and CFS were both one in the same, so I not only walked away being diagnosed with Fibro, but also with Chronic Fatigue Syndrome.
You have to learn to practice self-care. You have to learn not to push yourself when your body is screaming at you not to push. You can still be a wonderful parent, even on those days. Let's face it, Fibro is hard for us to understand and we live with it daily. It's even harder to try to explain to another adult. When it comes to children, how do you explain it to them without making them feel sad or scared? The slightest change in routine can be hard for a young child and can totally throw them off. But if you explain it to them in terms they can understand, and talk about it frequently, it will normalize it for them. Maintaining an emotional connection, making your children feel safe and loved, and participating in their daily activities is the goal for any good parent. Helping your child understand what's going on with you, will not only help them, but in the long run it will also help you learn to embrace your illness. Let's be honest here, when your kids are teens or grown they're more likely to remember the times Mama (or Daddy, or Aunty) cuddled them and read a story to them, than the day they ran around playing chase or tag lol. It will become "normal" to them, which will make it seem more normal to you!
Remember that not only is it okay to have off days, when you live with chronic pain and/or fatigue illnesses, but it's expected! Learn to embrace your journey, and find joy in those "small" moments. You're still being a wonderful parent.
For tips on how to talk to your child about fibro or another chronic illness you may have, and alternate activities you can do with them during flare-ups and "bad" days, check out my book on Amazon HERE & if you have a Kindle Unlimited subscription you don't even have to pay to get it!
This book is for children around the age range of about 5-8 years old. Not only will the story help explain that you have fibromyalgia, but it also will reassure your child that everything will still be ok. It also will give you, the parent, suggestions on a few things you can do (even WITH your child/children) that can help lesson the pain of a flare you're currently in but things that can even help prevent future bad flares. If I had been diagnosed when my kids were still young, I'd have given about anything to have a story like "Marley's Magical Hugs" to help both my kids and myself. It sure would've alleviated a whole lot of guilt I had. Especially where I didn't even "know" what was wrong with me.
Check out my author bio page on Amazon to also pick up book one in a series I'm writing about Grandma having a magical adventure with fun, furry friends! -This will give you another book to read snuggled up with your child on another hard day. As a parent with many chronic pain illnesses to all of YOU with chronic pain illnesses I'm here to tell you that YOU CAN DO THIS and I understand what you're going through!
I'm sending many gentle hugs to each & every one of you that's reading this. You're not alone. If you're not already part of The Fibro Frog FB Community come join us over there. We have close to 16,000 followers so there is always someone who can relate if you need to vent, have a question to ask, or just to make new friends that "get it". I'm always happy to "meet" new Fibro Froggies! <3
Also always remember the motto of this blog: Never give up HOPE. Without HOPE, you don't have anything.
I'm still "hoping" for a cure someday. For all of us.
