Fear, Worry, and Pregnancy With an Inflammatory Conditionby Julie Cerrone Croner Patient Advocate
There are countless fears and worries when it comes to dealing with an inflammatory condition. Add pregnancy to the mix, and you add a whole new batch with their own unique risks.
My health history was already a breeding ground for worry. I was on disability for four years and struggled with many things — avascular necrosis, psoriatic arthritis, complex regional pain syndrome (CPRS), melanoma, anxiety, and depression. Eventually, I was able to settle my anxieties and rebalance my hormones to move past my depression. I had a procedure for my melanoma, sent my CRPS into remission, and had a stem cell procedure for my avascular necrosis.
But my psoriatic arthritis wasn’t something I could cure myself. I knew I had to learn to minimize my symptoms and find a new way of living to manage my condition. I knew I would have to give it attention every day for the rest of my life.
This worried me because, at my lowest low, I couldn’t take care of myself. I couldn’t work, I couldn’t walk, I couldn’t make myself meals. I needed help taking a shower. I had to move back in with my family and relied on them 100 percent. As a 20-something feeling helpless, I couldn’t help but wonder what it would be like once I had a family. What would happen if I had a bad flare-up and I couldn’t take care of myself again with a family relying on me?
This became my number-one fear.
Once I recovered from the horrible flare-up that put me on disability, and really learned to manage my condition, I began dating again. Whenever I’d meet new men, this fear was always in the back of my mind. “If one day I couldn’t work and couldn’t take care of myself, would he alone be able to provide for our family?”
I honestly broke up with great guys because I wasn’t sure they’d be able to do this. It’s not that I was trying to be a so-called gold digger; it was that I knew I had to protect myself and future family.
Fast forward a few years, and I am starting a family.
When I found out I was pregnant, I was excited but petrified. All my fears of being able to manage my condition while being a great wife and mother started bubbling up. I knew I was going to have to deal with my number-one fear head on… but I wasn’t sure how I was going to do it!
After taking three pregnancy tests (you know, just to REALLY confirm I was pregnant), I realized I was going to have to deal with my number-one fear, but I was also going to have to deal with a whole host of fears I hadn’t even thought about yet.
Sure, there are the normal fears every mother has — will my baby be healthy, will I have complications, miscarriages, birth defects — the list could go on and on. But having a chronic condition made me focus in on a few fears in particular.
What about my medication?
As soon as I found out I was pregnant, I called my doctor. I had been taking apremilast (Otezla) and pain meds before I knew I was pregnant. I started to worry “was all of this going to affect my growing baby?”
After freaking out, my doctor calmed my fears by talking to me for a solid 20 minutes about how I was going to be fine; that research on Otezla didn’t show it was unsafe for pregnancy, but there weren’t studies that showed that it was safe for pregnancy either. He said that if I was OK with it, I should stop taking it.
I was definitely OK with it; I didn’t want to take anything that could harm the baby. But having to stop my medication made me worry about having horrible flare-ups during pregnancy.
Flare-ups during pregnancy
What would I do if I had a flare-up during pregnancy? If the medication that I was taking wasn’t proven (or disproven) safe for pregnancy, how was I going to control my pain or skin symptoms? I wasn’t going to be able to just pop a pain pill or take a pack of steroids.
My doctor told me that patients with inflammatory conditions usually get better during pregnancy. He said that, hopefully, I’d feel the best I’d felt in a long time over the nine months of my pregnancy.
Being active in the online patient community, I knew some mamas who had great pregnancies and went into remission. But, I also knew others who had nightmare experiences with flare-ups and additional symptoms popping up. Because I knew that remission wasn’t a sure thing, and that I couldn’t take medication to help, I started worrying about how the rest of my nine months were going to go.
Upon stopping my medication, my scalp was promptly taken over by psoriasis. Every itchy patch that showed up in my hairline raised my stress level a little bit. Then patches started popping up on my legs, arms, and chest. Every time a new little red mark showed, I started to worry that I was going to have a full-on flare. I was on high alert all the time wondering whether I was on the verge of a psoriasis flare, or if it was just my body adjusting to pregnancy.
Having health issues is something that really weighs on my mind constantly. As I worried more about my own condition, I began to worry whether my new baby would have to endure the same struggles I have.
Passing my condition to my child
I attended an FDA patient-focused drug development for psoriasis meeting in March 2017, and during this meeting several patients got up to testify and share their stories. One story really hit me hard and made me cry as I listened. A psoriasis patient opened up about her struggle with the condition and how she had made the conscious decision not to have children. She went on to say this decision was solely because she couldn’t live with herself if she passed her condition on to her children. This was the first time this thought had ever crossed my mind.
As I began to worry about having flare-ups during pregnancy, this terrifying thought would run through my mind: Could I pass my health problems on to my baby? My husband even asked me this same question, admitting that he had wondered the same thing. I honestly don’t know the answer, which scares me and isn’t very reassuring!
Science hasn’t pinpointed the exact cause of psoriatic arthritis (or the other conditions that I have battled), so there’s no way to be certain if I will pass it on or not. It’s still something I worry about. Will my baby grow up to endure a disability leave at such a young age as I did? Will my baby have to deal with countless knee surgeries growing up? Will my baby have clear skin, or will it be affected by psoriasis? These are questions that keep me up at night.
The aftermath of giving birth
Because I have many friends with multiple inflammatory conditions, I knew that my doctor was right — some women do experience respite during pregnancy. But I also knew that many times after birth, an inflammatory condition can come back with a vengeance. I stated my concern to my doctor, and he laughed. He agreed, but said that he didn’t want to tell me that part of the story because I was already worried. And this goes back to my number-one fear!
What happens if, once I give birth, I have a massive flare-up and I can’t take care of myself? How will I work? How will I provide for my family? How will I take care of an innocent child who now is reliant on me for everything?
I have to be extremely honest with you. In the beginning, these fears clouded my excitement over the arrival of my little bundle of joy. I was more terrified than excited. My grandma asked me if I was happy, and later my mom told me I should work on my answer because when I responded, it didn’t seem like I was very happy. But it’s not that I wasn’t happy about having a baby, it was that I was scared to my wits’ end.
It took great support from my husband and family as well as meditation, acupuncture, and time for me to really settle into accepting these fears and worries. As each week passes, they’re still in the back of my mind. But, I’ve set my sights on the positives. All I can do is to focus on the things that are in my control; to make sure I’m as healthy and prepared as I can be, and if things go awry, I’ll deal with them head on then. At this point, I can’t spend my time worrying about things that may not happen.
I know many people joke that it’s a mother’s job to worry, but is it? Is it healthy to worry about things we can’t control? At the end of the day, I’m working on moving past my fears and keeping my eyes on my amazing prize that I get at the end of these long nine months.
Will my medications in the first few weeks of pregnancy impact my baby? Will I pass on my conditions? Will I have a flare-up after I give birth? Only time will tell. And until that time, I’m going to enjoy the moments I do have and focus on the things I can control.