Parenting with Chronic Illness

By Erin Shaffer

The first thing you need to know about parenting with a chronic illness is that it’s impossible.  Let me break it down for you.

If you think of your energy as a monetary budget, you can more easily visualize this.  A normal person has an energy budget like the bank account of an upper middle-class American.  Regular deposits are made, and there’s a backup savings account to deal with any emergencies.  Their resources aren’t unlimited, but it’s pretty much enough to get them through the ups and downs of normal life.  When a car breaks down or a home repair is needed, they take a little from their savings accounts, maybe trim up their spending a little, but they can continue without much of an interruption in their lifestyle.

When a person has a chronic illness, their energy budget looks a bit different.  The resources in the account are meager, and there’s no savings to cover overdraft.  It’s as if they’re on a fixed income, with stingy little deposits coming at irregular intervals.  It’s from this perpetually depleted resource we must draw to find the energy to make it through the day.

What about a parent with chronic illness?  Okay, so picture that skinny little sad bank account, but with a big ole’ student loan payment being billed with merciless regularity.

See?  Impossible.

Right?

And yet, if you’re reading this, if you’re a parent with chronic illness, you’re doing it.  You’re doing exponentially more with exponentially less.  Maybe you don’t know how you’re doing it.  Maybe you think you’re doing a lousy job.  But you’re doing it.

I was diagnosed with Fibromyalgia when my daughter was two.  I’d been having pain for a few years that no one could find the cause for.  I ran the gamut of super-expensive diagnostics that diagnosed precisely nada.  I was put on heavy opiates long enough to become completely dependent, then told I was a drug seeker and denied the medications that were allowing me to function even as they made me act like a complete nutcase.  I took myself off opiates and learned to work through the searing pain.  Then, I got pregnant and gave birth via c-section.  I lost a lot of blood, and my energy level never quite recovered.  For a long time, I thought I just needed better nutrition.  I thought I needed to work out more.  I thought I was just going through what all new mothers went through.  After all, I was caring for an infant in the daytime and working full time as a charge nurse at night.  My (step)son is older, and he helped a lot.  Actually, a lot more than he should have had to.  There were so many days when I seemed to bleed pain and fatigue, when no matter how I tried I just couldn’t make my body move.  Work became more difficult.  I went to the doctor and was told I was too fat and given the most cursory of examinations before being dismissed.

Then one night, a co-worker tapped my shoulder to get my attention.  Though the touch was light, it felt as if someone were digging a spike into my shoulder.  That spike stayed there for over an hour.  That was when it clicked:  I have Fibromyalgia.  One of my oldest, most faithful friends has fought the fibro fight for many years, and I recognized the pain from the way she used to talk.  I looked up symptoms, found a new doctor that actually looked me in the eye when I talked, and told her my suspicions.  She thoroughly examined me, a lot more thoroughly than anyone else.  She also actually looked up the diagnostic criteria for fibro and began checking tender points.  I had a diagnosis, but I didn’t know what to do with it.  There was no cure.  The few meds that sometimes work for fibro, didn’t.  I still had no energy, and no matter what variants of a healthy diet I tried it didn’t change.  Caffeine didn’t work.  Supplements didn’t work.  I had to get through day by day, hoping that I was doing enough to keep my kids happy and healthy.

The holidays were especially hard.  I’d always loved Christmas, but now I started to dread it.  There was always pressure to work more, to do more, to take the kids more places and somehow instill the air with Christmas magic.  Most of my memories around my daughters’ first few holidays are through a blur of exhausted tears.  I remember one Christmas eve in particular.  I was getting ready to go to work.  I was going to put my daughter to bed, go work eight hours on my feet, come home, take heartwarming pictures of the kids opening presents, dress them perfectly, take them to Christmas festivities with family, smile, be engaging, make memories, live in the moment, and record all the Christmas magic for the years to come.  Then I would take them home, get an hour of sleep, and go back to work again.  I sat down beside my daughters’ crib, and I realized that I was too weak and tired to tell her the story of the first Christmas.  My body throbbed so badly that I couldn’t form the words.  I sat down on the floor, there by her crib, in the soft glow of twinkle lights, and wept because I couldn’t tell my daughter my favorite story in the entire world.

I’m not gonna lie, I was feeling pretty sorry for myself.  That low place got way too familiar as time went on.  I found myself on the floor more and more often, too weary and in pain to take another step.  And I’d like to tell you that I always managed to pick myself back up, but the reality of chronic illness is far from that.

However, I discovered something when I was there on the floor (besides the cat’s toy stash under the fridge).  I discovered I could get stuff done from down there too.  I discovered how delighted my little girl was to have mommy on the floor with her and her blocks.  I noticed my son could talk to me about his day just as easily when I was lying on the couch cradling a heating pad. I found out that in exchange for an extra hour of video gaming, my son would sweep and mop the kitchen while I took a nap.  I realized if I went about it correctly, I could prepare dinner almost completely sitting down.

So that’s what I started doing. I figured out ways to do things sitting down.  I began timing and scheduling my day to use my energy as efficiently as possible.  I started showing my husband the new ways I had learned to do things.  I talked to other parents with chronic illness, and I discovered they, too, had ingenious ways to get things done and be good to their kids.

At the time I had a little blog where I would chronicle the funny things that happened around my house.  Through the blog I was beginning to find that if I could re-frame something unpleasant in a funny way, it was much easier to avoid the mires of self-pity that made life one long trip to the dentists’ office.  The parents around me that were as sick as me or sicker seemed to have above-average senses of humor.  They limped their way through life with determination and a steadfast refusal to take themselves seriously.  These superwomen in comfy clothes somehow got everything done.

I watched all of this from the perspective of a nurse who has spent her career learning about controlling pain. Over time, the carnival that is the inside of my brain began to slowly assemble the data it was being fed.  The new coping mechanisms for parenting through pain aligned themselves with the principles I learned in nursing.  See, nursing is another field where weak and tired humans are asked to do the impossible flawlessly without a break.  My body and mind have failed me, and I’m not able to be a nurse right now.  But I did the impossible then, and I’m still doing the impossible, just like every other CI parent on the planet.

So going back to the “energy budget” concept.  If you’re a sick parent, you have to make that budget stretch, just like every other budget in your life.  That doesn’t mean that you and the people around you have to have less.  It means that with a little creativity you can do more than you thought with less than you dreamed.

The first way to stretch that budget is to plug all the leaks.  Leaks are parts of your daily routine that use more energy than they have to.  Leaks are things healthy people usually don’t notice, because their funds are being regularly replaced the way they should be.  Parents in pain can’t afford to have even a drop of their precious strength wasted on something that no one wants or needs.  If no one notices or cares about having their clothes ironed, get yourself a bottle of wrinkle releaser and go take a nap!  If your family doesn’t want complex home-cooked meals every night, order some pizza and give them vitamins.

Leaks can also be unfulfilled needs that we tend to ignore in our bodies.  Hunger, thirst, fatigue, and pain can all cause a low-grade drain to our energy.  Be vigilant about taking care of yourself.  Medicate for pain or anxiety before going into intense situations, especially ones where your kids need you to be at your best.

Remember that although kids are whiny, instinctively selfish little people, they are also psychologically programmed to love you more than anything on the face of the planet.  There is no love more complete, more selfless, than that of a parent and child.  Let that love fill in the gaps when you can’t be perfect.  They may be disappointed with canceled plans or frustrated with the differences between their lives and the lives of their friends, but as long as you keep a constant background dialogue of love, you can get them and yourself through anything.

Be honest with your kids about your health, especially when it has you feeling down.  Hiding things from little ones doesn’t usually end well, so just be open about your struggles.  My son began asking questions when he was about eleven or twelve.  By then I’d begun to need more help with things I’d always insisted on doing myself, and he was noticing.  So while I sat with him and taught him to help around the house, I talked to him about my body and why some days it seems fine but others I have trouble getting around.  It was hard at first explaining it in a way that made sense to a kid, but I just slipped it into a hundred different conversations at every reasonable opportunity.

And it helped.  I don’t expect every kid to be like Alex.  They’ll have varying degrees of difficulty understanding and accepting the concept of chronic illness.  Remember how hard it was for you to understand the permanence and indiscriminate meddling of your illness.  But as he grew, he saw the truth of what I was telling him, and that was all he needed.  He saw that I was trying my best.  He saw that I was learning to deal with things differently.  He also saw how deeply it touched me when he helped me.  Even though he was required to do his chores just because his dad and I believe kids need chores, I thanked him often and from the bottom of my heart.  When he couldn’t do his chores, or I helped him with them, I still told him how important he was to me.  He knows my love for him isn’t dependent on what he can do for me, but there is none of the helplessness in the face of suffering that I see from other kids his age.  He’s 15 now, and let me tell you, that kid walks tall.  He has the same insecurities of any teenage boy, but he is secure in the fact that he can help the people around him.  He’s compassionate, because he knows that everyone you see is fighting a private battle.  He’s seen people criticize me, call me a hypochondriac, rail at me for using a handicapped spot, and tell me how delightfully easy my life is.  He’s also seen how hard it is for me to do the simplest things.  He’s seen the moments I don’t let most people see, moments when I give up, the times that I’ve broken down, the days I lash out at the people around me because of the pain inside me.  He’s also seen me get up, make the most of it, choose to be happy, and find the joy in life.  Kids watch us, and even if we choose not to tell them the truth with our words, we tell them truth with our day to day lives.

Encourage creative solutions.  This one is difficult, especially for someone with less energy than the average bear.  It’s also galling for a Southern girl who was taught to do everything I was told with an immediate and enthusiastic “Yes ma’am!” or “Yes sir!” But I’ve learned over the years that not only does creativity trump intelligence for problem solving, it also breeds enthusiasm and engagement.  Anyone who has contact with the up-and-coming teenagers of the current generation knows that they don’t lack intelligence or work ethic, they simply lack enthusiasm.  Well, let them solve their own problems.  I’m not kidding.  I’ve seen kids who’ve had their problems solved for them.  While they may be excellent kids and turn out fine, their first instinct when they run up against a problem is to run back to their parent.  My solution is to stand with my kids, shoulder to shoulder, and let them take the lead in working out a solution.  Rather than expecting immediate, unquestioning, and exact obedience (which, let’s be honest, isnt’ that realistic anyway), if they come to me with a different solution they’d like to try, I do what I can to encourage it.  Of course, there are situations where for safety or other considerations they need to do what I ask without negotiation.  For these times, I tell them something along the lines of “Please just do exactly as I ask.  If you think of a better way to do it, we can talk about it after and maybe try it next time, but this time just do what I’m telling you.” (or, in emergencies, saying the word “NOW!” at the top of my voice seems to work out fine).

Of course, both of my kids are arguers.  They’re really, really intelligent so they have a lot of questions, and it took me a long time to learn that arguing is how they learn.  It’s how they assert their independence, and how they find their limits.  They would be that way no matter what my parenting style, though (I know because initially I tried the “do what I say when I say it without question” approach.  The result was not a sliver less arguing and a lot more frustration and tears on all sides).  I don’t have the strength to work against their nature, especially not when I see so many good and noble traits in them. So go with the flow.  Figure out what YOUR kid needs, and put your precious energy into those specific needs.

Be patient with yourself and them.  I was never called patient in my life until I married my husband and had two kids who both have anxiety and ADD.  Did I mention my husband also has chronic pain, anxiety, and ADD?  Lord help us.  But I learned that in the battle to conserve energy, it is ALWAYS less draining to keep my cool than to lose it.  It always takes less of my finite budget to take a deep breath and let things roll off.  Slamming doors hurts my hands.  Yelling makes my muscles hurt.  Stomping around angry causes hip pain.

Please don’t think I’m some kind of level-five zen master who levitates through the house on a cloud of love and pixie farts.  I’m a lunatic some days.  But through that lunacy I’ve learned that love, honesty, and creativity can patch those energy draining holes and give you better access to what few meager resources you have.

Thanks for letting me share my story.  You can email me at thechronicmama@gmail.com or message me on Facebook under The Chronic Mama.  I’m less fluent in twitter-ese and instagram, but if you don’t mind waiting for me to remember those platforms exist and check them you can contact me there.  Twitter is @riskywords and IG is The Chronic Kitchen.  Everybody take care of yourselves.  You’re the only YOU you’ve got.

The Chronic Mama