My candid reflections on pregnancy with an invisible illness

First off, let me reassure you that I’m not writing this out of a desire for pity. I chose to get pregnant while having a chronic, invisible illness. Well, as much as one can “chose” to do so—the rest is biological luck. On nearly all fronts, I am an incredibly fortunate and privileged person.

I’m writing this because I’ve noticed that a lot of other people with invisible illnesses, invisible disabilities, and autoimmune diseases are curious about what it’s like to be pregnant while dealing with a chronic condition. Sometimes the people in my life are also curious about whether or not I’ve felt better or worse while pregnant, but bringing it all up in conversation can be complicated.

The truth is, it’s vastly different from person to person.

When I first thought about becoming pregnant, I talked to my doctors and did what anyone else in my shoes would do—I Googled endlessly. There were almost no scientific studies on my condition (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in relation to pregnancy. I also have several other less-severe conditions that are common among CFS-ers: allergies, migraines, and interstitial cystitis (seriously ouchy bladder syndrome).

My doctors seemed optimistic about all of this. They told me there weren’t any medical reasons to avoid pregnancy—no increased possibility of harm to me or the baby—and that I might even go into remission while pregnant! (spoiler alert: I didn’t). It wasn’t an easy decision to make, but when you have an invisible illness, it takes a LOT from your life, and you may end up with a strong desire to fight to keep those parts of it that you still can. For me, one of those things was having a baby, and I knew it would only get harder to do that as time went on.

Fortunately, what I did find online were informal studies and several stories from other people who’d been through pregnancy with CFS. These were incredibly helpful to me, so I want to pay it forward by sharing my experience so far.

To summarize the past 8.5 months: I was not one of those lucky folks who went into remission from my invisible illness and other conditions while pregnant. A couple of things did get better, and some have been worse. My first trimester was hell, the second was a little better, and now with 4 weeks left I’m starting to have more flare-ups mixed with what I can only guess is normal third-trimester mayhem and tiredness.

So, here are my candid reflections on what my pregnancy with CFS has been like so far:

1. My body has become even more of a sneaky wanker.

Seriously, the crossover between pregnancy symptoms, pregnancy complications, and symptoms of my existing conditions is one huge, horrible Venn Diagram. Often, my day will go like this:

“Okay, I’ve had a headache for 24 hours now, and I’m seeing stars more than usual. Is it just a migraine? Am I dehydrated and having a migraine? Is it just normal pregnancy stuff? Should I call the midwife and get my blood pressure tested? I don’t want to bother them again. Hmm, how long can I ignore this before it becomes…foolish?”

“I’ve peed five times tonight and my bladder is on fire. Is this a UTI or just my cystitis?”

“Okay, is it a UTI this time?”

“IS IT A UTI THIS TIME?!”

“Is this just a CFS flare-up or am I anemic?”

confused math lady
source

Every time I call the OBGYN office, I end up starting the conversation with an apology for being that patient again. But really, I only contact them with my “very best of,” “greatest hits” symptoms and try to let the less serious stuff slide. For every one things I’ve called them about, I’ve ignored three others.

2. It’s not just about me now, it’s about the baby.

I’m guessing every pregnant person experiences this. The decisions you make while pregnant often affect both you and the baby. For me, it’s just amplified. Like anyone with ongoing health problems, I have more reasons to take medication, and more symptoms to worry about affecting the baby.

Just yesterday, I went through about 5 different non-medical headache treatments (ice pack? peppermint tea? face massage from the hubby?) before succumbing to taking a pill. It’s not so bad when I only have to take one medication at a time, but when I have 4 different problems going on, I get a little paranoid about dousing my baby in prescription and OTC drugs, even if they’re considered sort of safe.

3. I really, truly, try not to scoff at the complaints of non-sick pregnant people. 

Look, pregnancy can be difficult for anyone. Some folks have a relatively easy time of it, but a lot of people suffer through many common symptoms and complications during pregnancy. Fatigue, pain, mood swings, swelling, constipation. It’s hard. Anything that deviates greatly from your usual state of being in an uncomfortable or painful way will make you feel kind of miserable and likely to bitch about it.

So yeah, I do sometimes envy people the “standard” pregnancy complaints and I will whine about it occasionally, but I also know that it’s all relative to what you’re used to. I do my best to think about the ways that I’m lucky and try not get into a “more afflicted than thou” competition. After all, there are still people who’ve had worse pregnancies and illnesses than me, by far, and I can never know what someone might secretly be going through.

a photo of a pregnant orangutan with the words
source


4. I happily bask in comments from random strangers.

I know some pregnant people hate the onslaught of, “When are you due?,” “You must be having a boy!,” or “My, you’re about to pop!” but I’ve been enjoying it. Chronic or invisible illnesses can be isolating, so having positive conversations with people out in public is a great distraction. (Caveat: I recognize that I haven’t yet had any of the negative comments or rude, unsolicited advice from strangers that I so often hear about).


5. “How are you feeling?” is an even more complicated question that it previously was.

Almost any person with a chronic or long-term health condition will tell you how difficult it is to answer that question. How much do we divulge? Do we lie and say “fine” all the time? Do we actually describe how we’re feeling, at risk of opening up the Pandora’s box of conversation topics?

These days, I’m never quite sure if someone wants to know how my pregnancy stuff is going, if they’re just being polite, or if they want the full download. It’s not the other person’s fault—they’re being kind and considerate. It’s just a bit of a minefield on my end.


6. Every day I wonder what things will be like when the baby arrives.

There is no way of knowing what my body will do after I have this baby. My health could go back to the way it was pre-pregnancy (which was moderately crummy), it could improve, or it could get worse. I cling to the stories I’ve read about people who improved after their pregnancy. I cling to news about promising drug trials and mildly-effective treatments for CFS. I keep a list in my head of all the things I can do to be as healthy as possible, if I’m not already doing them.

My husband and I have created contingency plans for the best and worst possible outcomes. Those plans wouldn’t exist if I didn’t have the privileges that I do, and I try to remember that every day. Health insurance. A husband who supports us with his job. A nice home in a nice neighborhood. Helpful family and friends nearby. It goes far deeper than that, and spans many different factors and aspects of what kind of life and body I was born into. Invisible illness is the big thing that I struggle with, but there are a lot of things I don’t struggle with that others do, because of my race, socioeconomic status, family background, location, etc., and that all affects how I’ll be able to handle having a baby and child.


7. In a weird way, my invisible illness gives me bonus skills.

I’ve been through a lot of recurring or ongoing pain, fatigue, and other exceedingly unpleasant symptoms over the past several years. After a lot of denial and stubbornness, I’ve learned a few coping mechanisms that I might not have developed if I’d been more “normal” up until being pregnant or having a baby. I now employ a lot of different tools in order to maintain some semblance of a life while trying to cut through bone-crushing fatigue (no, it’s not at all like being tired or sleep-deprived) and the indescribable “brain fog” of CFS. (P.S. I promise I’ll write about these tools soon!)

It’s also helped me understand other people’s suffering and emotions a little more, and while I’m no expert empath, I hope that this slightly enhanced ability will help me be a good parent.

source


8. I’m excited to have this baby!

Yes, I have many of the same fears and apprehension that other moms-to-be do, but I also have the same anticipation of those who’ve been waiting for this chapter of their life to arrive. I’ve experienced the fun parts of pregnancy along with the hard parts—feeling the baby move around, decorating a nursery, getting cute and useful hand-me-downs and gifts, and just looking forward to all the baby’s little milestones. I try to make sure those don’t get overshadowed by my feeling crummy-ness.

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