Parenting while living with Primary Biliary Cholangitis

Parenting while living with PBC can present all sorts of challenges, such as how to talk to your children about your condition. And because PBC affects only about 65 out of every 100,000 women and fewer men — it can be difficult for parents living with the condition to find opportunities to share their stories with one another.

We asked several individuals who have navigated the challenges of raising children while living with PBC to share their experiences and insights.  Their answers to our questions have been lightly edited for space and style considerations. We’ve also used pseudonyms and/or abbreviated names to protect their privacy and the privacy of their children.

How old were your kids at the time of your PBC Diagnosis?

Grace
My kids were 8 and 11.

Jill
They were 5 and 10.

Jessy
My children were 13, 8, 7, and 5.

How did you break the news of your diagnosis to your children?

Grace
When I returned home from my first liver biopsy, I showed my kids the bandage and started my explanation to them with: “You know how you guys always ask me ‘Why are you so tired all the time?’ Well, the doctors think they might have an answer.”

I explained to them that I have a liver condition. I didn’t go into too many details regarding the autoimmune component. I only explained that my body is fighting itself, and that it’s not contagious and we don’t know exactly what causes it.

Jill
We tend to be pretty open with communication in our family, so it seemed natural to talk to the kids about what was happening with my many doctor’s appointments, diagnostic tests and procedures, including a liver biopsy.

I tried to be pretty factual with them and leave emotion aside (at least on my part). I explained some of my symptoms — fatigue, itching, joint pain — and how I have to take medicine to stay healthy, but also assured them that the medicine is doing its job.

Jessy
I told my kids that the doctors found out that my liver wasn’t doing its job correctly. I told them that this was the reason I had not been feeling well. I also told them that the doctors had given me some medicine to help me feel better and to help my liver do its job better.

What questions did your children ask you and how did you respond?

Grace
They didn’t really ask very many questions besides: “Will you be ok?” I told them I would be and that we were lucky that we caught it early.

I think they felt a bit guilty for giving me so much flack about being tired. I also think they were also glad to know mom wasn’t just being lazy! I still don’t think they really understand the long-term implications of the disease; I haven’t really gone into it.

Jill
They wanted to understand what the liver biopsy would be like — including whether it would hurt — and wanted to make sure biopsy didn’t mean cancer. I explained the liver biopsy and how quick it is, and what it would tell my doctor.

My kids also wanted to understand how PBC makes me feel, and what they could do to help. On days when my fatigue is really bad, they are very helpful. I tried to explain to them that when I’m tired it isn’t a sleepy tired, and that even if I take a nap, I still wake up feeling tired.

Jessy
My children did not ask many questions initially, probably because we stayed very optimistic at the beginning. As time went on, and I was tortured more and more with itching to the point of bleeding from scratching, they became more concerned.

After a year of unresponsiveness to treatment, I had a biopsy that indicated I was in stage 4. I was hospitalized twice over the following several months for medical procedures. I believe the kids’ anxiety increased each time I was hospitalized.

They could also see my body physically deteriorating and noticed that I wasn’t able to do the things I had done before because of my low energy. They did not ask many questions, but they showed deep concern for me and they begged me not to itch or be sad.

We did a lot of snuggling and some crying. It was a very hopeless and desperate time for me, and it became increasingly difficult for me to keep things normal for the kids.

My health deteriorated to the point that I was listed on the transplant list. We told the children that my liver had gotten so sick that the doctors decided I needed a new liver. The children seemed to understand right away that this was a scary thing. At that time, my youngest was 6. He yelled, “I don’t want you to die!” before covering himself with a blanket and curling up in a ball. He cried and cried.

That’s when I realized how much he understood and that this was going to be a tough journey for all of us. There was a lot of snuggling during that time. By the way, I’ve had my new liver for two months now, and it’s functioning beautifully!

What are some of the biggest challenges you’ve faced as a parent living with PBC?

Grace
The biggest challenge for me is feeling guilty for not being able to keep up with the perception of what other families are doing. For example, during the holidays, I often see people taking their kids on action vacations, like skiing or camping. I just don’t have the stamina to do things like that with my kids. I feel as if they are missing out on a more-adventurous childhood because of the fatigue that I suffer with PBC.

Jill
The biggest challenge is being present for everything I want to be present for when I’m battling overwhelming fatigue and joint pain. I also feel as if I get overwhelmed with doctor’s appointments and testing. As a mom who works full-time out of the home, I find it challenging to balance time off of work for appointments, especially when I want to be present for things with my kids, like class parties and field trips.

Jessy
It is challenging to maintain a sense of normalcy for my kids. I want to protect them from the stress and fear of having a sick parent. It’s also physically challenging to parent from a place of exhaustion, discomfort, and frustration. It’s difficult to manage meds and doctor appointments on top of their schedules. At the same time, I know my kids keep me going a lot of the time.

How have you handled some of the challenges you’ve faced?

Grace
The guilt I feel is a “me” issue. I know my children have opportunities to do certain activities with other family members and relatives. At the same time, I try to create our own fun traditions: I like to go on cruises because they are relatively low-maintenance and low-key. If I feel tired, I can rest while the kids play in the kids’ club — or in the pool while I watch from the sidelines. We also go to lots of movies and play games at home, both of which are relatively easy.

Jill
I am learning to schedule one or two things in a weekend, and no more, because if I do, I’ll be too fatigued and won’t be able to participate fully.

Jessy
Prayer — a lot of prayer. We’ve also re-evaluated our schedule as a family and simplified where we can. We’ve all made some sacrifices to make our home run more smoothly. (Superwoman has her limits!) Being willing to accept help from others and to ask for help when needed have also been important.

I do my best to rest while the kids are at school so that I can give them the best part of me when they’re home. I have also tried to keep their routines as consistent as possible.

As a family, we are blessed to have many friends around who want to help. But when it comes to the kids, it’s best to keep the number of helpers limited and predictable.

I follow their lead when it comes to talking about my health — giving them the information they’re seeking without overwhelming them. It’s been very important for my husband and I to realize that our children are gaining something from this journey. They are gaining sympathy, empathy, teamwork, and resilience. Their faith has also been strengthened.

Looking back, would you do anything differently in terms of talking to your kids about PBC and parenting while managing the disease?

Grace
Although I don’t have too far to look back on, I think I would have been more honest with myself about my limitations, instead of trying to keep up and feeling resentful. I have a much better understanding of what my limits are now.

Jessy
I can’t say I have regrets. We’ve been real, and sometimes raw, but I honestly believe we are all different in a good way because of the lessons we’ve learned along the way. Most importantly, we’ve learned to love each other and to focus on what’s truly important in life.

What can friends and family members do to best support parents living with PBC?

Grace
I think friends and family members can really listen to parents living with PBC. If I turn down a playdate, it’s not personal: It’s because I’m too tired.

I really try not to flake on appointments at the last minute, but to do that, I may prematurely turn things down. It’s always nice to be invited, but if we turn something down please don’t guilt us into it.

Jill
When someone with any autoimmune disorder cancels plans, it’s not because they just don’t want to go, or be part of something. A little bit of understanding helps a lot. Just be understanding when we are tired or need space.

Jessy
Drop off a meal. My friends set up a meal train. I didn’t have to worry about dinners for two whole months. If you’re close to the kids, set up a time to pick them up from school and take them for ice cream or to the park. Better yet, take them for a Saturday or Sunday. My kids have been spoiled with trips to the zoo, manicure-pedicure trips, mall excursions and more.

You can also offer to pick up and wrap Christmas gifts. One amazing friend of mine dropped off cut-out Christmas cookies with everything the kids needed to decorate them.

Be patient. You can’t see our sickness, but we are reminded of it daily. Spend a morning helping with laundry or housekeeping. Send a note sharing your pride in our parenting.

What advice do you have for parents who have recently been diagnosed with PBC?

Grace
Please be kind to yourself. Kids are very malleable. Listen to their needs as well as yours: There is a solution that will work for everyone. You don’t have to be the martyr just because you’re the parent. In fact, just like on an airplane, you need to make sure you have your oxygen mask on before putting on your child’s.

Jill
Find a hepatologist who you’re confident in. I really value how organized my doctors are. My hepatologist keeps standing orders for my liver-function tests in my medical chart, and had the nurse send me messages to remind me to get them done. Also, don’t Google. Find a support group and look to the American Liver Foundation (ALF) or PBCers Organization for information.

Jessy
Take a deep breath. Join an online support group. Be consistent with appointments and medication. Stay positive. Cut back on stress in your life: You may need to let some things go. Identify your support system and learn to ask for help. Don’t be too hard on yourself. Just focus on what’s most important. Love your children.