What I Wish I'd Known Before Getting Pregnant with Chronic Illness

When I became pregnant with my first baby, I was terrified.

Not because I didn’t want to become a mother.

Because I couldn’t find anyone who could tell me what pregnancy with chronic illness was actually going to be like.

Google had almost nothing.

My doctors were kind, but most admitted they didn’t really know.

The books on pregnancy assumed a healthy body.

The books on chronic illness rarely mentioned pregnancy.

So I did what many of us with chronic illness end up doing.

I became my own researcher.

Now, after four pregnancies, years of reading the literature, talking to specialists and supporting hundreds of other women, there are a few things I wish someone had told me before I saw those two pink lines.

This was one of the hardest things for me to accept.

Some women experience a symptom holiday during pregnancy.

Some feel much worse.

Some stay about the same.

I had all three experiences across four pregnancies.

Trying to predict how you’ll respond is almost impossible.

Preparing well is much more useful than trying to predict the future.

This is probably the biggest lesson I learned.

My easiest pregnancy wasn’t luck.

It happened after years of improving my sleep, pain management, pacing and nutrition.

The healthier my baseline became, the better I coped.

If you’re thinking about pregnancy, don’t just prepare a nursery.

Prepare your body.

When you’re nauseated, exhausted and wondering how you’ll survive another week, this can be hard to believe.

But pregnancy has an end date.

There are milestones all the way through.

Then you meet your baby.

Keeping that bigger picture in mind helped me through some very difficult days.

One of the biggest mistakes I made was waiting until I was struggling before figuring out what to do.

Now I’d encourage anyone with a chronic illness to think things through beforehand.

How will you pace?

What medications need reviewing?

Who will help if you’re too unwell to cook?

Who can come over after the birth?

How will nights work?

These conversations are much easier before you’re exhausted.

Pregnancy introduces a whole new group of healthcare professionals into your life.

Many will be wonderful.

Some won’t know much about your condition.

That doesn’t make them bad clinicians.

It simply means you’ll often be the expert on your own body.

Read.

Ask questions.

Take notes.

Bring research.

Partner with your healthcare team.

This one took me years to learn.

Growing a human is already a full-time job.

If your body is also managing chronic pain, fatigue or another long-term illness, resting isn’t giving up.

It’s part of the treatment plan.

Psst. I teach my best tool for rest - Yoga Nidra Guided Meditation - in Yoga Nidra 21 Day Rest Habit; it’s the most restful course you’ll ever take. It’s on sale for a very limited time. Yoga Nidra is a form of guided meditation that you can do throughout your pregnancy, recovery, and the rest of your life.

I wish someone had told me this before my first baby.

I thought breastfeeding was all-or-nothing.

I didn’t realise expressing was an option.

Or combination feeding.

Or that formula wasn’t failure.

Each of my babies taught me something different.

What matters most isn’t how your baby is fed.

It’s that your baby is fed and you remain well enough to care for them.

This might be the most important lesson of all.

As parents, we’re often told to sacrifice everything.

But you can’t pour from an empty cup.

Looking after yourself isn’t taking away from your baby.

It’s one of the greatest gifts you can give them.

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When I became pregnant with my first child, the book I wanted simply didn’t exist.

So over the past few months, I’ve been rewriting the book I published years ago—back when I still believed I had fibromyalgia.

It’s now called Pregnancy and Parenting with Chronic Illness.

Instead of focusing on one diagnosis, it brings together everything I’ve learned from four pregnancies, raising four children, years of research and two decades of living with chronic illness.

It’s the book I wish someone had handed me before I became pregnant.

If you’re trying to conceive, expecting a baby, or supporting someone who is, I hope it helps make the journey feel just a little less lonely.