We all have that one relative, who every time they see you, always asks, “So, when are you having kids?” or the mom who is desperate to be a grandmother.
It’s annoying for any twentysomething, but it’s even more annoying when you have a chronic illness. Because guess what?
The answer truly is “I don’t know.”
It takes a lot more planning to become pregnant, and a lot more things can go wrong. So even if you’ve always wanted to be a mom, sometimes it might be out of reach. And then that question becomes less annoying, and more painful.
In my case, I’ve always had strong maternal instincts and looking after my younger siblings made me realize that I really enjoyed it! So, while the idea of being pregnant has always kinda grossed me out, I figured being a mom was definitely in my future.
But when I was diagnosed with Behcet’s disease and told that I would be starting on treatments where I was absolutely not allowed to get pregnant, it was a bit of a shock.
Yeah, having kids was the furthest thing from my mind. I had mentally put it on the shelf for “someday years from now.” But in a way, it felt like “someday years from now” could very well be never.
While my doctors reassured me that I would still be able to get pregnant, it was clear the pregnancy itself wasn’t going to be easy. One of my biggest triggers is stress. Sound familiar, right? And being pregnant is a huge stress! Sure, it brings the happy mommy glow and the ability to eat whatever you want, but you can’t deny that it’s a stressful thing for your body to go through.
And when you’re pregnant, you can’t take a lot of the medicines that you normally take to feel normal. Being pregnant without pain pills? A flare is rough enough with them!
Now, some conditions, like rheumatoid arthritis, actually have about a 70% chance of symptoms improving or going into remission during pregnancy. Behcet’s is not so lucky. It’s so uncommon, that there haven’t been many studies done on it. But in one of the few studies out there, there’s about a 50% chance of remission, 27% chance of the disease getting worse, and about a 20% chance of no changes. Interestingly, with Behcet’s, if a woman has one reaction the first time she’s pregnant, she won’t necessarily have the same reaction in other pregnancies.
Depending on your treatment, you may even have some options to help relieve pain and keep your disease quiet while you’re pregnant. Again, everything isn’t foolproof, and no medicine would definitely be best. But you have to consider the possibilities: Is the stress of not having my disease in check more harmful to my baby than the potential side effects of the medication?
These are the kinds of questions you should be asking your healthcare team. And honestly, they might not know the answers. Behcet’s is so rare and its effect on pregnancy is so understudied, that you and your doctor might be learning this together. And that’s scary. But here’s a great resource to get you started.
If you have active Behcet’s disease and you want to have kids, at first pregnancy might not look like the best option. But take heart: many women have done it, and if you have a great team around you, you have options.
At the end of the day, that’s really what we want: options. We want to be able to make choices, instead of feeling like they’re being taken away from us. We want to feel like we can still have the life we dreamed of, even if we have an unexpected disease on the ride with us.
