What I’d Tell My Chronically Ill Self if I Was Considering Having a Child

Recently, I got back in touch with an old friend of mine whom I hadn’t spoken to in years. This friend, like myself, bravely struggles with both chronic physical and mental health issues, as many, many people do. She is also considering having children, and asked if I could consider writing some posts about how I balance being a mom with chronic illness issues. 

My daughter is now three years old, and she was a complete surprise. When she was born, I was not yet diagnosed with Ehlers-Danlos Syndrome, Bipolar Disorder,  or Chiari Malformation, though I definitely struggled with these issues during pregnancy, even if they didn’t have labels yet!

If I were to be in my exact level of sickness that I’m in right now, but not have a child, here are the nine pieces of advice I would give myself while considering whether or not to have a biological child. 

1. It is likely pregnancy will be very hard on your body. 

I may have had no idea that I had EDS while I was pregnant, but what I DID know was I felt sick: so very, very sick, pretty much the entire time. There was no break from the misery, though it did come in many different flavors of miserable. 

I threw up multiple times every day. I couldn’t even keep a prenatal vitamin down. I had back pain that was so bad, I was in the hospital overnight. I had several early labor scares and one “threatened miscarriage”, where my body tried to miscarry my baby and I ended up in the emergency room, scares. I had horrible acid reflux and pain everywhere. 

This won’t necessarily be everyone with chronic illness’s experience, but it was mine. Pregnancy was incredibly hard for me. Some people say you forget all the bad parts about pregnancy as soon as you have a kid, which is great for them, but definitely wasn’t the case for me. I still remember my rough pregnancy vividly! 

2. You might grow disheartened comparing yourself to healthy pregnant people/moms.

Over three years later, it’s still hard for me to see people’s healthy, happy pregnancy pictures on Facebook. I knew my mom loved being pregnant, and it was really hard for me that some people have this awesome pregnancy experience and mine was so hard. It resulted in a weird guilt/sadness mixture that still persists.  

3. Some issues might be better during pregnancy. 

I had a physically horrible pregnancy, but mentally it was surprisingly great. My anxiety and panic attacks went almost completely away during pregnancy. I also could eat gluten without getting sick, which I definitely couldn’t do for two years before and can’t do now! 

4. Having a supportive partner is crucial…

My husband is AMAZING. Seriously, if I wouldn’t have had such a supportive partner, I don’t think any of this would have been possible for me (maybe it would have, but I can’t even imagine!). Open and honest communication about what you are feeling and what your limits are, and what you need, is crucial. My husband was in full time law school at the time, but still made so much time for me. He ran so many errands, getting me support belts or new clothes or medications or the rare food that didn’t make me throw up. 

And it’s important that the support continues once you have a child, too. Having a kid while I am chronically ill works because my husband and I are a solid team. He knows my chronic pain and other symptoms limit me, but he doesn’t see me as a burden. He picks up where I can’t, and I focus on my strengths–giving her baths, taking her to school–so he can take breaks too. We never keep score of who’s done what. We both work together, and love each other and our daughter. 

5. …as well as others who make up a strong support system. 

I don’t live near most of my support system (which I plan to write another post about soon). My family and most of my friends are 5+ hours away, and my husband’s is 2 hours away. We have some good local friends now, but didn’t when I was pregnant. 

That being said, your support system doesn’t have to be within walking, or even driving, distance for them to be a good support system for you during a chronically ill pregnancy and raising a child. The internet was awesome. And my far flung family and friends still ended up throwing me three baby showers. The outpouring of long distance love and support I got meant I rarely felt lonely, even far from family. I also joined an online moms group, and made some incredible friendships through that too. 

Getting involved in churches has also been an incredible source of love and support. We moved to a new city the day I found out I was pregnant, and one of my first priorities was to find a local church so I could be surrounded by a community of like minded people. I’m so glad I did! They prayed for me, did a meal train for me when I was on bedrest and after I just gave birth, and some even visited me in the hospital. It was great having those local connections to help sustain me in a new community. 

6. Your symptoms might get worse after giving birth. 

I am not sure I’d even know about my EDS or my Chiari had I not given birth. My issues increased tenfold postpartum, especially my pain and headaches. 

7. Chronically ill moms are different in some ways than other moms…but not just in negative ways. 

Yes, I have limits as a chronically ill mom: but I also have strengths. I know perseverance well, and I encourage my daughter to never give up. I am extremely caring and empathetic, and pass those traits on to my daughter too. My daughter knows mommy gets sick a lot, but she’s incredibly understanding for a three year old. I make adaptations to make parenting easier: we hang out on the bed, in the bathtub, wherever is comfiest. She knows mom has to take medicine and eat special food. I think it’s giving her quite the others-focus and servant’s heart already, and that’s so beautiful to see. 

8. Self-Care will be incredibly important. 

“Mommy martyrdom” is a huge risk for all moms. It is what happens when a new mom tries to do it all, and grows burnt our and resentful in the process. This is to be avoided in all moms, but especially those who are ill. Regularly crossing your limits isn’t healthy for you, your spouse, or your child. It is essential to have strong self awareness and systems of self care in place. Taking a break isn’t selfish; it’s essential. Not only for you, but for modeling taking care of yourself for you child! Because don’t we all want children who take care of themselves and think they are precious, something to be respected? In order to have well adjusted children brimming with self worth, we have to acknowledge our own inherent worth and treat ourselves well, too. 

9. Your kid will be alright. 

You are not dooming a kid to a life of misery by being a chronically ill parent. Kids need love, boundaries, affection, and role models, and no one has to be in 100 percent perfect health to do that. 

If I had to do it all over again, even with the foreknowledge that I would get sicker post-pregnancy, I would choose to have my daughter again any day of the week. 

But I also understand that having a child when chronically ill is a very difficult choice. My illnesses are the biggest reason my husband and I do not plan to have a second biological child. But I am also incredibly thankful for my daughter, and I wouldn’t trade this experience of raising her, even with my chronic issues, for anything.