Being a Parent With Fibromyalgia & Chronic Fatigue Syndrome

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Parenthood is enough of a challenge when you're healthy, and with an illness like fibromyalgia or chronic fatigue syndrome, it's especially difficult. I know it's something I struggle with every day, and a recent comment left by a reader put our common struggle into words really well:

"I still feel like I'm letting my kids down because I'm not able to do/be/have enough
energy to give them everything they need. But at least, I guess, they're learning
that when Mom says in answer to, 'Can we go/do.......?' 'It depends on how I'm
feeling' really means just what it says. I try to say 'yes' some of the time for
little things and make sure I'm able to follow through, but I feel like I'm saying
'No' constantly.

I've lost many so-called 'friends' because of my inability to make plans, but it's
with my children that I *really* feel guilty."
-A.

Like her, I try to say "yes" and give my children fun times, but unfortunately they have to settle for "I'll try" far too often.

I've said before that we have to learn to accept certain things, and this is another one of those things. It may well be the hardest one to accept, though, because we all want to give our children so much, and it's hard to think about them missing out on meaningful experiences because mommy or daddy is sick.

While I can't always choose fun activities for the kids over things like laundry and housework, I do put off the mundane now and then so that I have the energy. I also look for things that they can enjoy that are also low-key for me -- a play area at a park or inside the mall, a children's museum we have in town, places where I can sit and watch them. My kids are also lucky enough to have a dad who's great about taking them to do stuff while I stay home, or who involves them in household projects and makes it fun.

I don't know that any of us can ever truly get past feeling like we're short-changing our children, but I think kids with chronically ill parents probably do learn some valuable skills. My kids have had to be especially self-sufficient and learn to entertain themselves. Having seen kids whose parents do every little thing for them, I'm proud that mine are able to do so much for themselves -- and you know what?

They're proud of themselves, as well.

My kids have also learned early that illness is just part of life. They're very compassionate, and they aren't uncomfortable around sick or injured people. They're at the doctor's office with me enough that it's not a strange or scary place for them. They've even seen acupuncture and cupping performed. I do think it's possible, however, for kids who are around chronic illness to worry too much about their own minor illnesses and bumps and bruises -- that's something we're working on with my son.

In some ways, I think it's been easier on my kids that my fibromyalgia developed when they were little -- my son was 4 and my daughter was 1.5. They don't remember the year I spent laying on the couch in excruciating pain, and they don't remember when I was healthy. This is just how mom is to them. We've talked about the differences in how kids react based on age, and it seems like teenagers have the hardest time. That makes sense; they're going through major changes already, and then all of a sudden a parent can no longer fill the accustomed role.

That can create a lot of insecurity. No matter the children's ages, though, family counseling might be something to consider, so that everyone can work toward acceptance of the situation.

I think we need to remember 2 things when raising children while living with a chronic illness:

  1. We cannot judge our parenting skills based on other people's expectations, and
  2. We need to be honest with our children.

I know, number 1 is easier said than done, but it's crucial. It doesn't do us any good to beat ourselves up over what we can't do. I've had to ignore my mother, who tells me I "just can't be on the couch all day" when I'm home with my daughter. It's easy for her to say that from 670 miles away, when she's still has the energy at 64 to babysit my niece and nephew, but what can I do about it? Some days, it's all I can do to provide basic meals for my family, and if I don't rest in between I won't even be able to do that. I have to focus on the basics, and anything beyond that is a bonus. Martha Beck, who's now a life coach (you may have seen her on Oprah) and fibromyalgia advocate says she raised her children from a king-sized bed. Do what you can, and make sure they know they're loved. That's all any parent can do.

As for number 2, I think it's important not to underestimate our children. Now 5 and almost 8, my kids can tell you a lot about anatomy because we've always explained as much to them as they could understand. They know I have limitations, they've seen what happens when I do too much, and they rarely seem upset when I say, "I can't." While just saying that makes me a little sad, I have to wonder if it's not a good lesson, in a society where instant gratification is the norm.

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