Single Parenting with Chronic Illness – I Don’t Feel Like an Expert

I am writing an article about chronic illness and single parenting.  You would think I am the expert on this particular topic, but as I stare at the page in front of me with few words on it, I am not so sure.

I have written on hundreds from topics from coping with illness, illness on the job, including about legal rights, emotions of illness and so much more, and even parenting with illness.   My 100 plus articles would tell you that my nearly eight years living with two chronic illnesses and writing about it successfully that I am, in fact, an expert on chronic illness.  But why is this particular topic nagging at me and I am struggling to put the words to paper?

Perhaps, it is because I feel like I am muddling along day-to-day trying to be the parent my children need and deserve.  I am not an expert at parenting or single parenting.  I am just a parent – like every single other parent out there.  I am struggling with the same struggles and I have most of the same worries. I am trying to make ends meet.  I am wondering if I am offering enough love and kindness and I am trying really hard NOT to screw them up.

The only thing that sets me apart from single parents without chronic illness is that I fear that my illness interfere with the parent I want to be.  I struggle between the parent I feel I should be and the parent I have to offer. I feel guilty and I have ill-conceived notions about what good parenting looks like.  I hate that I am not physically strong enough to be the parent I “think” they need and deserve.  Or that sometimes, my emotions get in the way. That I am too harsh because I am hurting physically or that I give in too easily because I am too sick and tired to handle something in the “right” way or what I think is the right way.

Or maybe, I am not screwing this up at all. Maybe, I am getting it right but sometimes, being sick makes it harder to see that.

I have a normal teenager.  He is mouthy, rude and sometimes, a smartass but that is all he is.  He is a teenager who never gets in trouble and respects everyone he comes across. He treats people with kindness even when they don’t deserve it. He sees goodness when his own mother can’t see it.  He teaches me to be a kinder person in a world that is harsh.

I have a seven year old who is smart beyond his years.  I see in him the person that I wish I was through his eyes. He thinks I hang the moon.  He sees me as someone with all the answers even when I feel lost. He sees me as his protector even when I don’t feel strong enough to get through the day. He sees me as the kind, loving, smart, funny, and wonderful parent that I don’t always see myself as.

I don’t know if I am getting it “right.” I don’t know what good parenting looks like. I just know my kids are fine.  I have done something right and as for chronic illness, I am the only one that sees it as interfering with my parenting.  My kids don’t seem to think so and their opinion is what matters.

And anyway, what makes a parent good or successful? Home-cooked meals? An impeccably clean home? Being able to participate in rigorous activities with your kids? Over the years, I have learned that none of these things have anything to do with good parenting.  But I still don’t know what good parenting looks like.

All I know is I am doing something right.  And I need to figure out a way to put it down on paper so that other parents with chronic illness know that they are not alone in their fears and their questions. But I don’t know if I have the answers.  After all, I am just muddling along in my own parenting.

Taking Off the Super-Parent Cape With Fibromyalgia

How to be a great parent while managing fibromyalgia and not over-extending yourself.

Taking Off the Super-Parent Cape With Fibromyalgia

You might know Supermom. You might even be her. I am—well, I was Supermom until chronic illness forced me to take off my invisible cape.

My Secret

Once upon a time, I had a secret that few people knew. Behind my perfect façade, I was sick and exhausted. I was losing sleep, setting highly ambitious schedules and goals, and overwhelming myself—all things that aren’t a good idea with rheumatoid arthritis (RA) and fibromyalgia.

The natural law of “something has to give” eventually took its toll on me. And I realized I didn’t have the ability to bend time or do things without effort. I was a just a mom with chronic illness and no superpowers.


I Stopped Feeling Guilty About Being Chronically Ill

Don’t let the guilt of being chronically ill rule over your life.

I Stopped Feeling Guilty About Being Chronically Ill

I am no stranger to the overwhelming burden of guilt about my health and how it has affected my family. My chronic illness guilt isn’t constant but is due to factors such as stress and flare-ups. Moreover, it affects my daily life, my personal and professional responsibilities and my ability to participate in social functions. I have spent a lot of years dealing with self-imposed guilt but I have also learned that I don’t always have to feel guilty about my illnesses.

In the Beginning

I was diagnosed with rheumatoid arthritis and fibromyalgia shortly after my youngest son was born and I am now six years into my battle with chronic illness and pain. My pain over the years has gone from widespread, to hard to control, to well-managed, to activity specific and vice versa. My illnesses have invaded every aspect of my life and my kids’ lives.

Learning to manage the effects of chronic illness on my life — our lives — I often wondered whether the sickness and pain will ever leave us. I saw chronic illness as an unwanted houseguest — unannounced, interfering, and causing havoc on all of our lives. And the sicker I got, the more I needed help managing my home life.

I felt incapable and angry because I wasn’t able to do things that I “should” be able to do, such as cooking healthy meals and keeping our home clean. I often overdid things and ended up with flare-ups that kept me in bed for days and from doing all the things I desperately wanted to do. It was a never ending cycle of guilt and flare-ups and all I wanted to do was to continue to work, feel productive and to take care of my family.


Parenting with Chronic Illness: One Mother’s Lessons Learned

“We Are Not Alone and We Are Good Parents”

Parenting with Chronic Illness: One Mother's Lessons Learned

Five years ago, shortly after my second son was born, my life was thrown a curve ball. I woke up one morning to all over body pain, unable to walk. My hands were curled into fists. I was caught unprepared. While I had dealt with unexplained symptoms and pain for a number of years prior, I did not have a diagnosis and my symptoms had never been this severe.

In that morning, I went from being a young mother to being chronically ill. My pain and symptoms were so bad I could barely hold my newborn. I needed my mothering instincts to kick in and I could barely take care of myself. If not for my sister, those first months after my diagnosis would have been even harder.

Uncertain about My Parenting

Even though much time has passed, every now and then, I find myself uncertain about my parenting abilities. I wonder if I am coping effectively enough with my RA and fibromyalgia to be the parent my children need and deserve.

I might be chronically ill, but I am still my children’s mother, and parenting often requires that I take attention away from myself and give it to my children who need me more. I am different than healthy parents because I parent with pain and fatigue on a near daily basis.

I am not the only one who suffers from the effects of my chronic illnesses. My sons, like other children with chronically ill parents, have many questions and insecurities about the future. The best I can offer them is my honesty and openness about the impact of chronic illness on all of our lives. I know providing age appropriate answers to children is not an easy task, but it is necessary to put children at ease.

What My Kids Question

My 5-year-old sees my chronic illnesses in the present. He has never known a healthy mother and his questions have more to do with how I am feeling now versus how I will feel tomorrow or in the long term. He understands that sometimes Mommy hurts, or that she is too tired to play with him. What he doesn’t understand is that I am chronically ill and that I will be for the rest of our lives.

My teen, however, understands that permanence. He knows I am chronically ill and that I will be sick for the rest of my life. While he doesn’t necessarily understand the specifics of my illnesses, he has questions about the future and whether things will get worse for me. He worries about schedules and routines and often asks to help out. He needs reassurance that someone will always be there for he and his brother and he wants to believe that will always be me.

I may not have the answers to all their questions, but experience has taught me that my attempts at honesty hold more value than dismissing my sons with an “I don’t know,” or telling them, “Tomorrow will be better,” when I’m not sure that will be true. I’m not sure how I will address their concerns when they are older and if my health worsens. I just know their lives are not easy or normal because I am not healthy.

Lessons Learned

Being chronically ill may have changed me, but it has also changed my children. I know my children are kind and understand empathy more than most children their age. I know they value honesty and openness and are sensitive and caring. And, as they get older, I know they will be better prepared for life’s obstacles as a result of the lessons we have learned as a family, dealing with and managing the effects of chronic illness.

I, too, have learned some valuable lessons. I have learned that removing guilt is best for my children and me. I cannot be the parent they need and deserve if I feel guilty that I am sick. Moreover, I know I cannot fight flare-ups. I just have to allow flare-ups to run their course so I can recover and go back to giving 100 percent to my children.

I know hiding my symptoms from my children only scares them. By sharing what I am feeling, I am allowing them to feel involved and I remove uncertainty. Further, I have found my children are more resilient and more empathetic than I ever imaged they would be.

I have learned to appreciate the days where I feel healthy, strong and on top of my game, and I have learned to make those days count.

Finally and most importantly, I know that being sick does not make me a bad parent. If anything, I try even harder to make my parenting count.

We Are Not Alone and We Are Good Parents

There are millions of parents living with chronic illnesses and trying to balance being sick and raising children. We are not alone and we are good parents. We are responsible for both our own health and for our children’s security. That means we continue to be parents despite chronic illness and we pay particular attention to how our children are affected. Sometimes that means parenting through the pain and fatigue in order to offer them a sense of normalcy, and other times it means leaving the channels of communication open between you and them.

Much has transpired since those first few months after my diagnosis. Since then, I have learned to better manage my disease with medication and good nutrition choices. While I am not asymptomatic, my chronic illnesses have not taken away my ability to be employed or to care for my children. Granted, I have had many moments in the past few years where I questioned my ability to balance my chronic illnesses and my parenting. Nonetheless, knowing that I am raising kind, caring, honest and prepared children allows me to question my parenting less.

Originally posted at Arthritis Connect.