To the Chronically Ill Parent Trying to 'Do It All'

Parenting is hard under the best of circumstances. Parenting with a chronic illness often takes epic levels of juggling responsibilities against our illnesses, excessive amounts of sleep and a lot of caffeine. But the caffeine might be to help treat your three-year migraine, instead of the normal reasons one might live on coffee. If you can even have caffeine.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

And, often, it also comes along with a whole mess load of guilt.

Guilt because I overslept my alarm, and my kid was awake well before I was.

Guilt because I had to reschedule that day at the zoo.

Guilt because I spent the last three days mostly asleep on the couch while my kids watched TV, just awake enough to make sure they were safe but otherwise basically comatose and in agony. All because I had taken them to the beach the day prior for an hour.

Guilt because my 7-year-old son had to make his sister’s PBJ sandwich for dinner. Again.

Even writing this, I feel residual guilt, even though I have since had some significant perspective shifts.

And fear.

Fear that they would only remember me being sick.

Fear that someone would think I was neglectful.

Fear that I would fall asleep too deeply and one of them would get hurt.

Fear that my kids would have to grow up too fast, especially my oldest. My oldest who, from an early age, helped shoulder some of the responsibility for his sisters when I couldn’t. See the aforementioned PBJs.

I’ve found myself telling my story frequently on support groups, where a common thread is “I feel like I am letting my family down. I feel so much guilt because I cannot be there for my kids the way they deserve.” Parents who are earlier in their journey than I am, that know how much different their kids’ lives are because of their parent’s illness. Even if their kids don’t know it. They are looking for reassurance that it will be OK.

I’m here to tell you it will be OK. Here is how I know.

My kids are mostly grown now. Two of my children are young adults. In my son’s senior year of high school, I had gotten significantly sicker and had ended up back at doctors’ offices, desperately hoping to be heard, as I had never really been heard before. For many years, I had significant daily pain and fatigue. But with a diagnosis of fibromyalgia and chronic migraine “only,” I was dismissed continually by doctors for many years. Every symptom was chalked up to fibromyalgia or dismissed out of hand as in my head.

I asked my new provider to please evaluate me as if I had never walked into a doctor’s office before, and I am grateful that he did. But what he did find completely changed my life trajectory. At the very least, it changed my perception of what that trajectory should be. It also forced me to closely examine perspectives and approaches that have been habit so long, they are deeply entrenched.

I was, for the first time, forced to talk about what I go through day to day, my lifestyle choices, what it all means for my health, so I could make the necessary changes to ensure I live as long and healthy a life as possible.

This initiated conversations with my almost-grown children, and one of the things that came up amidst these discussions was my fear that they would only remember me being ill.

Their responses made me cry, but in a good way — from relief. I could finally start to put down some of my burdens.

They told me that, while they do remember me having a lot of headaches and needing to rest a lot, those aren’t the things they remember first when they think of their childhoods. If attention is called to it, they recollect it. But what they remember is me reading them stories. As infrequent as I felt they were, they remember the trips to the beach or the zoo. Going to Grandma’s house for a sleepover. They remember their mother — not their mother who was/is always sick. Their mom who loves them. To them, I’m just Mom, and while the illness comes along with me, it is not what defines me to them.

You see, nobody informed my kids that their mom had to be Supermom. Even healthy, active adults buckle under the pressure of feeling like they have to do it all. I was so terrified they would only remember that I was sick, that I never stopped to actually let myself be sick.

Except what actually happened was the fallout was so extreme, I inadvertently made myself much worse.

What they needed was their mom to be present in their lives, they needed love and hugs and support. Nobody handed them a guidebook on what their childhood should look like for them to compare notes against. We’re the ones keeping score.

So if you’re reading this and nodding along, remember your kids do not need a superhuman parent. They need a parent who is present for them in the ways that really matter — and those often aren’t what we think they are. In fact, being the superhuman parent actually becomes unhealthy not just for you, but for your children.

They need your love and support. They need you to teach them how to be a decent human being. They need you to be as healthy as you can be, so you are here to meet your grandkids. They need to see you stumble and pick yourself back up so they know it is OK not to be perfect. They need you to show them that strength sometimes isn’t obvious. They need to see you making healthy choices, even when it’s really hard.  And that means taking care of yourself. It’s OK to cancel plans. It’s OK to rest after a day out. It’s OK to listen to your body and adjust.

As my kids transitioned to adulthood, I realized that the primary one holding up that measuring stick was me. Sure there’s always the possibility of people in your life who think they can do it better than you, who are always there with less-than-helpful judgments or criticism. But that is true of all parents. I think that when you add chronic illnesses into the mix, it’s really easy to take those criticisms and add in our own layer of guilt over being sick. Especially if the criticism comes in a form aimed at our health.

So if you are raising, or have raised, children while also coping with being sick all the time, make sure you give yourself credit where credit is due. I bet you are doing more right than you think. It’s hard under the best circumstances. When you’re doing it under less than the best circumstances, it’s even more important to give yourself the space your body needs to recover, to adjust expectations and demands so you are not putting as much stress on yourself. Sometimes, surviving the day is enough.