Chronic EHM's and Parenthood

Parenting is a challenge on the best of days.

Are you parenting with a chronic illness? Well, that has its own set of unique challenges. In my eight years being a mom, I have faced my fair share of hard days.

Parenting with a chronic illness

Walking through the hepatitis C cascade of care when my children were still toddlers brought immense challenges. Prior to treatment, I experienced extreme chronic fatigue. I would be lying if I said that it didn't have an impact on my parenting.

Having two toddlers at the same time is fatiguing enough without tacking on chronic fatigue. So how did I manage in those early days when I was hepatitis C positive and a newly single mom of two young children under two?

I am fortunate enough that I had a lot of support from my kids' gran, my mom. I know that many people are not lucky like that. We were lucky and were able to move in with my mom in her apartment for the first two years of single motherhood, and although it was cramped and not always easy to cohabitate with others, I was extremely fortunate to have her around.

Fatigue was my worst symptom as a new parent with untreated hepatitis C. If left to my own devices, I am sure I could have easily slept 15+ hours a day and still been tired. However, that is most certainly not possible with a very fast-moving and inquisitive toddler plus a new baby who needs to eat every two hours (and YOU’RE the food!)

Being a mother with chronic fatigue

I managed by doing my best to fit in the sleep I needed by following the age-old adage of “sleep when the baby sleeps.” When my children were two and three years old, I was able to receive treatment in the form of the medication Epclusa, and I was ecstatic, thinking I was finally going to be free from the more unpleasant symptoms of hepatitis C.

For a time I was, I was able to start working and found a career path I really liked, but unfortunately, this “free and clear” period didn't last long enough. A few years after receiving treatment, I started to notice an upcropping of unusual symptoms around my whole body.

Weird purple spots on the skin of my legs, severe numbness and tingling in my arms, odd and unexplained swelling and rashes, but the worst symptom of all was the pain.

Initially, it wasn’t present all day, but within a year, the symptoms had worsened to the point where it was apparent something was seriously wrong. A year after that, I was finally diagnosed with a disease that is considered to be an extrahepatic manifestation of hepatitis C called cryoglobulinemia.

The impact chronic conditions can have on parenting

By this point, two years after symptoms appeared, there was a massive and significant negative impact on my life and, unfortunately, my parenting. My range of motion had decreased quite substantially, and I was just not able to do as much as I wanted to with my kids. Especially in the winter, as cryoglobulinemia is triggered by exposure to cold temperatures.

Unfortunately, cryo (as we who have it often refer to it) is autoimmune in nature and not curable. Meaning this is a new chronic health problem I have to deal with.

There will be periods of good and not good health, and I will have to work closely with a number of different health professionals to manage the various symptoms.

This includes optometrists, ENTs, rheumatologists, neurologists, OTs, PTs, cardiologists, psychologists, and more.

The worst thing I think is that having a chronic illness and having kids means they have to go along for the ride alongside you. So every experience of the ebb and flow of remission and relapse, every symptom, every treatment, and every medical event, they are there for it all.

It can be grueling for everyone in a family, especially children.

There is no magic answer, unfortunately, on how to address these kinds of things with kids. However, I have found that they are more understanding and perceptive than we often realize.

I have found the best way to approach this was to be honest and realistic but positive. My kids are a bit older now, at seven and eight, and can understand much about the human body and why certain things happen, like cryo.

However, they are still little, so I made sure to use simple terminology and explanations. There is no easy way to parent when dealing with chronic health issues like hepatitis C or its extrahepatic manifestations.

However, I hope this article gives you some comfort that although it can be really hard, so is life in general. Billions of people have parented with chronic illnesses before me, and sadly many will come after me too.

I find that sentiment oddly comforting when I start to feel like I am failing to juggle all my hats in the way I want to. It was important that I was able to let go, even just a bit, and accept that some days will just be really hard for my kids and me because I have cryo that is incurable.

Despite that, I feel it is deeply important to continue to try and improve my parenting, seek health and well-being, and not give in to the ‘sad’ too much.

It's not a perfect solution, but it's the only one I’ve found that feels like a balanced and pragmatic approach to my future with a chronic extrahepatic manifestation like cryo.