How to Parent with a Chronic Illness

Mother and father holding hands with childFor many couples, the decision to have a child is a no-brainer. After a year or two of married life, they decide they’re ready to transition from newlyweds to parents. If they’re fortunate enough to conceive easily, a bouncing baby girl or boy may arrive within the year. Sounds simple doesn’t it? Well, not for those with chronic illness.

Many factors go into the decision to have children when you are ill:

  • What are your doctor’s thoughts on your illness and pregnancy?
  • Will the pregnancy make your condition worse?
  • Will the treatments you receive for your illness harm your unborn child in any way?
  • If your disease is hereditary, will your child inherit your condition?
  • Do you have the physical strength to endure a pregnancy?
  • Should you consider adoption versus pregnancy?
  • Do you have the support and encouragement of your spouse, family, and friends?
  • Do you have the financial resources to hire someone to help care for your child if needed?

Fundamentally, there are two issues that come into play for couples with chronic illness who desire to have children.

  1. If you are able to get pregnant, how will your chronic illness impact your pregnancy and vice versa?
  2. Will your chronic illness permit you to parent your child?

Just Because You Can Get Pregnant Doesn’t Mean You Should

Two years after getting married at age 37, I was determined to get pregnant and have a baby. It didn’t matter that my neurologist couldn’t tell me much about the effects of limb girdle muscular dystrophy on pregnancy or if a pregnancy would radically reduce my physical strength. It didn’t matter that I had extensive fibroid surgery two years earlier that now made a cesarean delivery my only option. It didn’t matter that my twin sister, who also has limb girdle muscular dystrophy, conceded that her body had become weaker after her two pregnancies. None of that mattered because I wanted to get pregnant!

And I did. I became pregnant and experienced the most crushing fatigue I have ever known during the first eight weeks of my pregnancy. I was exhausted all the time and had terrible nighttime nausea. I began to wonder what I had gotten myself into.

At nine weeks, I suddenly miscarried. I was inconsolable. I was 39 years old and began to wonder if I was ever going to become a mother. My husband Jeff gently brought up the topic of adoption. From the start, Jeff wanted to adopt as a way to build our family. He always believed it was a better option for us considering my physical limitations. I wasn’t so sure but began to give it some serious thought.

It took a while for me to grieve both the miscarriage and the loss of not having a biological child. On my more rational days, I truly did understand the toll a pregnancy would take on my body, the burden it would put on Jeff, and the significant amount of care a newborn baby would require. I gradually warmed to the idea of adoption. Ultimately, I decided that being a mother was more important than being pregnant.

On a sunny February day, we submitted our paperwork to an adoption agency with the hope of adopting a little girl from China. Twenty months later, we traveled to China to meet our new 4-year-old daughter, Claire. Once we returned home and got past a period of adjustment, the three of us settled nicely into our daily routine. She is by far the greatest blessing we have ever received.

It Takes a Village

Only you know whether you have the capacity to parent a child while you have an illness. No one can make that decision for you. You have to be honest with yourself about whether you have the stamina, energy, and resources to bring a child into your life and marriage.

The old adage that it takes a village to raise a child is true, especially for those of us with chronic illness. Parenting is hard work.  Breaks are few and far between even when illness is flaring or you’re struggling with extreme fatigue. But parenting well in spite of chronic illness is possible as long as you’re willing to ask for help and be creative.

Here are some tips I and others have learned along the way in our journey of parenting with chronic illness:

  • Pace yourself. It’s amazing how quickly the pace picks up when you have kids.  I do my best to slow down in the early afternoon in order to conserve energy for pick-up from school and the rest of the day’s activities.
  • Ask for help when you need it. You can’t do it all. It’s OK to ask for help from your spouse, family, or friends. Just be clear on what you need or how you want something done. You may even want to consider writing down instructions for the most common tasks. Most people are happy to step in and provide assistance.
  • Be as interchangeable as possible. I think the strongest marriages (and families) are those in which mom and dad are interchangeable. If mom is sick, dad can step in with ease (pack school lunches, return permission slips, purchase gifts for kids’ birthday parties, etc.). There is no break in continuity or routine for the kids.  Being interchangeable takes both practice and patience but is well worth the effort.
  • Create your own niche. In our house, Jeff is the physical one taking Claire on errands, including her in yard work, and going biking or hiking with her. I take on more of a nurturing role, helping Claire with her homework, doing puzzles, or painting with her at the kitchen table. Creating our own unique niche allows us to spend one-on-one time with her while playing to our strengths and accommodating my illness.
  • Kids are resilient. Kids are a lot tougher than we give them credit for. They are not thinking about how unfair life is because their mom or dad is sick. Most are just busy being kids and don’t know anything different. Stop beating yourself up!
  • You define “normal.” If you are self-conscious about your illness, your child will be too. Try to integrate your illness into everyday conversation and life. It’s not something to be ashamed of or embarrassed about. Teach your child by example that people can still lead happy and productive lives despite being ill.
  • Create an awesome playroom. When we returned from China, I was exhausted. Traveling around China for two weeks took a lot out of me physically. Upon our return, we created a playroom in our dining room with some toys and crafts. When I needed to rest, I would lie on the couch and watch her play. You don’t need to spend a lot of money furnishing a playroom. Visit garage sales or ask friends for hand-me-down toys and games. You can also often find sales on play dough, hobby kits, and paint sets.
  • Learn the language of feelings. Most nights during dinner, we check in with our SASHET feelings (sad, angry, scared, happy, excited, and tender). We use this time to express the mix of emotions we’ve experienced during the day. Claire loves this practice and often reminds us when we forget. This is a great opportunity to take your family’s “emotional temperature” and discern how your chronic illness may be affecting your spouse or child.
  • Build your support team. I have a few people I go to when I really need a break due to illness or simply a night out with my husband. My husband, my mother-in-law, our high-school-aged babysitter, and my neighbor are all wonderful about giving me some much needed time to myself.
  • Don’t compare. It’s tempting, and we’ve all done it, but comparing yourself to “healthy” parents is pointless. Instead of dwelling on how your chronic illness limits you, focus on what you can do. I focus on connecting emotionally with my daughter as well as showing her physical affection. She never doubts my love for her, and I speak her love language when I spend time with her. I may not be able to go sledding or roller skating with her, but I can give her my love, time, and attention.

As many people have said before me, parenting is the hardest and also the most rewarding thing I’ve ever done. I thank God daily for my daughter and the gift she is to me and my husband. In hindsight, I now know that I could not have handled a pregnancy or cared for a newborn without compromising my health. I have no regrets. Adopting a 4-year-old—who was already fairly self-sufficient—was absolutely the right choice for us.

If your heart’s desire is to be a parent, don’t give up hope. If you’re willing to think creatively, research your options, and ask for the help you need, parenting and chronic illness can coexist.

© Copyright 2011 by Helena Madsen, MA, therapist in Gilberts, Illinois. All Rights Reserved. Permission to publish granted to GoodTherapy.org.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • 19 comments
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  • Erica

    Erica

    March 28th, 2011 at 12:15 PM

    It can be very hard for someone who has a health issue to actually go trough the ‘routine’ process of having a baby.I have seen a friend struggle and am really proud of her resilience.But when all is said and done and the baby is growing up,it gives the parents immense joy that their hard work has finally paid off.

  • ROSA

    ROSA

    March 28th, 2011 at 11:39 PM

    People are more pre-occupied with work and other things now more than ever before. But we have found alternatives and newer solutions to managing kids. So I am sure there are solutions to problems that are faced by people with health problems to mange their kids. If there could be instructions passed on to such new parents, I’m sure it would help.

  • howard

    howard

    March 29th, 2011 at 3:36 AM

    well,if you see it in one way you will feel that it is difficult for a parent with a chronic illness to have and maintain a baby.but with a little but of courage and faith,in fact a baby can become a new reason to live,love and be happy in one’s life,while the illness sinks into the background.

  • Trey

    Trey

    March 29th, 2011 at 4:41 AM

    It sounds real selfish to me to bring a baby into the world knowing that you may not be there to raise it. Very selfish.

  • Lewis

    Lewis

    March 29th, 2011 at 12:13 PM

    If one parent does have a chronic illness then it can be compensated for by more effort from the other parent’s side. But it turns very different when the affected parent is the mother and making a baby may be a complicated process.

  • Yvonne

    Yvonne

    March 29th, 2011 at 3:15 PM

    That first bolded part reminds me of an episode of the Golden Girls where one of them wanted to try IVF, and in a dream she had, everyone wound up pregnant and she said “When I said anybody could do it I didn’t mean everybody!” :) Congratulations on your adoptive daughter, Helena. It sounds like you guys have this parenting stuff all figured out beautifully. :)

  • Roger

    Roger

    March 29th, 2011 at 11:54 PM

    This is also a wonderful thing for advocates of adoption. If a couple is unable to have a baby or would have trouble with making a baby they would do well to adopt one. There are a lot of kids out there without a family and it would be great on your part to give love and care and a new family to such a child.

  • Sandy

    Sandy

    March 30th, 2011 at 4:44 AM

    What a wonderful way to allow part of you to live on with the spuse that you may have to leave behind due to illness. But I would never do it if I thought that any harm could come to the child at all through having to conceive and give birth in this type of medical situation. I don’t think that anyone would ever want to harm a child in that way. There would be a lot of hardships and maybe even heartache that could come along with this child but I think that the happiness over it would far outweigh the sadness.

  • Hazel

    Hazel

    March 31st, 2011 at 7:22 PM

    Some people just shouldn’t have kids because of serious hereditary illnesses. You quite literally force it on your child and I feel that is just selfish. There are so many children out there seeking adoption it doesn’t seem necessary.

  • Jordan

    Jordan

    March 31st, 2011 at 7:32 PM

    That’s a very harshly phrased comment Hazel, but I’m inclined to agree. Some illnesses like that however can be cured when they’re still developing, and they can live a life without having to suffer. And who knows, a woman may go on to have a perfectly healthy child anyway despite the risks.

  • abigail

    abigail

    March 31st, 2011 at 8:03 PM

    It amazes me how many new parents are reluctant to ask for help. That ends up causing more problems than having to take a scratch on your pride. It’s worse to be called an unfit parent or to become so stressed out that you can’t function. Family and friends are always willing and waiting in the wings for you to just do so, so ask! We’re not expected to be superhuman.

  • Tricia

    Tricia

    March 31st, 2011 at 9:28 PM

    @abigail. Absolutely! Everyone needs support at one point or another. If there was something wrong with asking for help, society would collapse overnight. We’d all end up causing minor disasters by doing things by ourselves we really shouldn’t have, leaving things we can’t or not asking someone else we know could do it better. I for example wouldn’t touch anything to do with electricity nor could I turn off the water if I had a burst pipe because I’m not strong enough to turn it off at the mains. (Tried it and failed.) Anyway, helping makes others feel good too so why deny them that?

  • Emmanuel

    Emmanuel

    March 31st, 2011 at 10:06 PM

    I have to agree with the comparing point. Some people simply have it better in some respects than others and you can’t change that. You need to take what you have and use it to the best of your ability. Play the hand God deals you with a smile on your face.

  • Spencer

    Spencer

    March 31st, 2011 at 11:40 PM

    @Erica Especially if it’s something that can be extremely disruptive to your lifestyle like narcolepsy or seizures. You can’t make a routine if something will regularly disrupt it every few days. You just go with the flow and do your best to accommodate your family’s and your own needs.

  • Paul

    Paul

    April 1st, 2011 at 10:00 PM

    It’s important to tell your kids what to do in case of an emergency if you have a serious complication occur. Even if it’s to just pick up the phone and speed-dial someone, it could save your life in really bad cases.

  • ricardo

    ricardo

    April 2nd, 2011 at 6:16 PM

    @Paul- everyone should know how to call 911 from a young age. They also need to know when to call. It’s basic but there is no telling how many lives youngsters calling the emergency lines has saved and how many wish they had taught their children how to do so and didn’t. I taught mine because they stay at their grandma’s overnight some weekends. You never know when an emergency will arise.

  • madison

    madison

    April 2nd, 2011 at 7:33 PM

    Virtually every medication on the market tells you to consult your doctor if you’re pregnant. People with a chronic illness must take the biggest gambles with their own lives when having kids. I know I read that sometimes they stop taking their medication for the entire pregnancy in case it harms the baby.

  • Annabelle

    Annabelle

    April 2nd, 2011 at 10:02 PM

    I can’t imagine having to make those kinds of decisions. An ordinary pregnancy was hard enough on my body. It’s very brave to take that stress on board when you have a chronic illness to cope with too. Bravo.

  • Jenny

    Jenny

    April 5th, 2011 at 9:59 PM

    If you have any doubts about your health and the health of a baby you carry, you should just adopt. Why is it so important to would-be parents to have a child with their own DNA? In the end, it’s just genetics that really mean nothing when time passes. What matters is the loving bond you form with your child, adopted or not. That’s what being a parent is about.

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