Kim Wayne’s 5-year-old son loves to ride his bicycle and wants to go on bike rides with his mom quite often. However, Wayne, who was diagnosed with IC in 2006, oftentimes has too much bladder pain to go on a bicycle ride with her son. So she’s found less physical activities for them to do together on rough bladder days. While it works, she still struggles with her feelings about parenting with IC.

“My biggest challenge as a parent with IC is the feeling of guilt,” Wayne said. “It bothers me that I can’t always be active with my son.”

Wayne isn’t alone. Many IC patients have children and are finding ways to care for them in the midst of managing their health and pain.

Challenges for IC Parents

Just like Wayne struggles to do her son’s favorite activity with him, so do other IC patients struggle to be active with their children and even do more simple tasks like walk them to school. Savannah Dittman, a 27- year-old IC patient who’s had IC symptoms since she was 4, said she doesn’t have a car and has to walk her son to school every day. She worried about how she’d manage that feat in the midst of a flare. Recently, she had a bad flare, but he had to get to school. So she pushed herself.

“It was excruciating,” she said. “I took a few Advil in hope to dull the pain a bit and muscled through it.”

Vanessa Symonette does the same thing. The 27-year-old’s IC symptoms started after her daughter was born in October 2010. She didn’t get a diagnosis for two years in spite of her severe pain and blood in her urine.

“I pushed myself and always took care of my child,” Symonette said of that difficult time. “No matter what state I was in, she never knew anything.”

Even now that she has a diagnosis and treatment options, Symonette still can’t keep up with her daughter like she wants to, but she tries.

I do what I have to do,” she said. “I ignore my body the best I can. I have learned my limitations over the years.”

Georgeanna Wright, a 38-year-old IC patient who was diagnosed in 2005, has two daughters who keep her going. Her 14-year-old daughter was born before IC symptoms started for Wright and during her pregnancy with her now 4-year-old daughter, her IC remission ended and symptoms returned worse than before. Her pain has definitely affected her parenthood.

“My biggest challenge is finding enough energy to participate fully in my children’s activities,” Wright said. “Sometimes instead of active activities like basketball or playing at the park, we have to color, play puzzles or read things that allow me to spend quality time with them but are not as physically active.”

Like Wright, Stephanie Whitaker also has teenaged children. The 38- year-old was diagnosed with IC in January of 2015 after her pain began in December 2013. Whitaker has two teenaged children and two teenaged stepchildren. Her health has declined steadily throughout her IC journey and has certainly impacted her family and role as a parent and mother. Her husband, Eric, and children Quentin and Sydney, have done their best to be supportive.

“I have had to pick up more responsibilities around the house,” said 18-year- old Quentin. “My mom isn’t able to do a lot of the things she used to.”

14-year-old Sydney added: “Mom used to do stuff with us all the time – at church, at school, with Girl Scouts and my friends. She doesn’t get to do that anymore. She says she wants to but she can’t because she’s either too tired or in pain. I try to understand that she’s doing her best.”

Family IC Conversations

Another concern for parents with IC is talking to their children about the disease. Younger children might be scared, older children might be resentful, but all children want to know something about what’s going on.

Stephanie said she didn’t really understand IC at first so she told her children without much detail.

“I didn’t really have a discussion with them until it was absolutely vital that they knew I would never be the same again and that they needed to help more around the house,” she said. “It was a very frustrating conversation for us because I hadn’t taken the time to explain things to them in a calm fashion. It was more of a screaming match. Once things had calmed down, I had a private conversation with them to apologize and answer any questions they had.”

Her husband, Eric, also helped with talking to the kids and answering their questions. He plans to keep them posted on new developments as they happen as well.

“I just laid out what the diagnosis is and what the side effects were and the possible long-term outcome,” he said.

Quentin said his mom was blunt in her discussion, and he understood what was going on with her.

“I agreed to be more compassionate [and] not ask for more than she was able to do,” he said.

Sydney didn’t realize IC was a big deal until her mom started feeling worse. Since then, she’s been learning more about the disease and said the facts her mom posted on Facebook during IC Awareness Month in September helped her learn even more.

For Wright, discussing IC is different with each of her children because they are 10 years apart in age. Her 14-year-old daughter understands the most, but she’s also discussed IC with her 4-year-old.

“My oldest can understand a bit more having had health classes at middle school,” she said. “She knows that I have pain and need her help getting dinner ready or helping watch her younger sibling. For my youngest, we have read the book ‘My Mommy has Interstitial Cystitis’ from the IC Network. This gives her the basics of the pain and frequency and why mommy has to use the potty so much.”

Wayne, Dittman and Symonette all have 5-year-olds, so they haven’t explained IC in detail to their children just yet, but they do explain things like that mommy’s tummy hurts.

“I have explained that mommy has tummy trouble and that some days mommy is just very tired and really doesn’t feel well,” Symonette said. “[My daughter] is very kind-hearted and compassionate. There are some days, however, that she thinks because mommy is down for the day she can do whatever she wants and doesn’t have to listen or abide by rules. Those days are very difficult because I have to push my pain as far back as I can and I have to show her that just because I am down and hurting that doesn’t mean she will get away with bad behavior.”

Finding The Positives

While parents with IC struggle to push themselves to get through activities and general child-rearing with their kids, there are also good things that have come as a result of parenting in the midst of chronic pain.

Symonette said even on the rough days she is thankful for her daughter and the motivation she gets from being a mom. “God blessed me with [my daughter] to give me the strength to fight,” she said.

Being a mom has taught Symonette to have a respect for life. Her daughter is her top priority and Symonette pushes herself to do fun things with her daughter. She has learned to appreciate her life more fully.

Wayne has seen positive outcomes with her son in his dealing with her disease. “My son is autistic,” Wayne said. “I have read that it can be difficult for autistic kids to show empathy. My son is very in-tune with how people feel. When I say my tummy hurts, he will often ask if I need my heating pad. I’ve also noticed that if a child at the park is upset, he will try to comfort them.”

Dittman sees the same thing in her son. She said he’s a very sympathetic child and is compassionate with her when she’s not feeling well as well as with others. “My son is much more understanding of another person’s plight than I think most 5 year olds would be,” she said. “And our little family is much closer for having gone through this together.”

Stephanie’s husband, Eric, sees the same thing in his family and said they have gotten closer to each other as they work together to make sure Stephanie is taken care of. Her son, Quentin, who wants to have a career in emergency medicine, said taking care of his mom now is helping him prepare for his future of taking care of others. And her daughter, Sydney, is learning to be more tolerant and patient with her mom. “I now know that she really wants to do more things but she just can’t,” Sydney said.

And while parents with IC can’t do as much with their kids as maybe other parents can, Wright said that doesn’t necessarily matter. IC has taught her to appreciate the good days and really make the most of them.

“I believe it is more about the quality of time you spend with your children not the quantity,” she said, mentioning a recent trip to an amusement park that was challenging for her but created priceless memories for her family.

Sharing Advice

In true parental style, these IC parents also have advice for other IC patients and their families on their journeys. Wayne said her best advice for a parent newly diagnosed with IC is to be patient with themselves and with their children. It’s a learning process that takes time to understand and figure out how to manage.

“A chronic illness is difficult for everyone involved,” she said. “To the spouse, [I would also] suggest counseling to the family if it becomes too difficult for all involved if you find that they are not coping well.”

Symonette also mentioned the importance of communication. She said even just being open about not feeling well is a good start.

“Don’t dwell on your illness, but be honest so that they can understand,” she said. “Once you accept this is the new way of life, it gets easier to handle.”

Wright said being educated about IC is also important for patients as is treating themselves well.

“Try not to lose hope,” she said. “Yes, your life will change, but that doesn’t mean it can’t be equally satisfying but in a different way. Treat yourself with care, just as you would if a friend or loved one were ill. Know and respect your limitations, but don’t be afraid to live life!”

Stephanie, who went through a long and painful road to get her diagnosis, said some of her best advice is to keep detailed notes about doctor’s visits, which can help IC patients advocate for their best care. Her son, Quentin, said he would encourage spouses to stay in tune with one another.

You will be challenged,” he said. “Remember why you fell in love with each other, because there may be times when you will be tempted to give up. That would make the condition worse on the patient.”

Stephanie’s daughter, Sydney, said she would encourage another child whose parent has IC to find someone to talk with to answer their questions and be careful not to upset them and make them feel worse.

She had these words to say for parents dealing with IC: “Know that your kids love you, but may be having a hard time with it. They miss the old you just as much as you do.”

Finding The New Normal

After dealing with the challenges of parenting with IC, talking about it as a family, finding the positives and even offering advice for others, parenthood with IC boils down to what most things do with a chronic illness: finding the new normal. Whether IC was present before or after children were born, chances are family life with IC is going to be dif- ferent than expected.

While healthy parents may be active with their kids physically, IC parents can be just as active with their kids just in different types of ways.

Stephanie and her family with older children have found that watching movies and playing board games together is good for family bonding and fun while still being easy for their mom. Her husband, Eric, said they also try to have dinner together as a family once or twice a week to catch up.

“I refuse to let this disease take away my active role as a mother. I will always be the best I can for my daughter’s sake.”

—Vanessa Symonette

Wright agreed and said that her family is similar. They play board games, do puzzles, paint and have family dinners. “Sitting down to eat together is important even if I can’t eat what they are having,” she said. Movie and game nights also work well for Symonette’s family. “A board game or card game is a wonderful way to be involved while you are lying with your heating pad or ice pack,” she said.

Dittman said she and her son like to snuggle in bed to watch movies. While he may not snuggle with her through an entire movie without wanting to get up and play or move around, it at least gives them some downtime and some bonding time together.

When Wayne is flaring, she and her son also watch movies, take naps and color. She will take him to a nearby park and lie on a picnic blanket while he plays.

With support from loved ones and a bit of creativity, IC parents are making parenthood work for them in spite of the challenges they face. They are determined to manage both their health and their families.

“I refuse to let this disease take away my active role as a mother,” Symonette said. “I will always be the best I can for my daughter’s sake.”