Chronic illness? No kids for you.

>> Saturday, July 11, 2009

I know every inch of my gastroenterologist's office by heart. The cheesy wellness magazines, the smell of cleaner, latex gloves and the palpable fear of a new prednisone prescription.

I've come to tolerate weekly shots of intense medicine in my stomach each week, become so inured to the pain I just keep on talking about my day while I watch my fiance reluctantly push the button, wincing when he sees my face quickly tense up and my toes momentarily curl under.

I know where every single bathroom is located in every single place I've spent more than ten minutes--down to The Village Voice offices in New York City to countless Middle Tennessee Walgreens (and I know the security codes to boot). I can tell you which ones are the most frequented, which ones the most private.

I tried not to laugh in my fiance's face yesterday when he said he'd used the bathroom almost ten times that day (he has the stomach flu). Ten times is nothing. Try twenty. Thirty. Even forty when things have gotten really bad.

I've been through a lot because of Crohn's Disease. But does it mean I wish I'd never been born? Hardly.

In fact, I'm grateful. Grateful for the trials, the necessary strength, and the perspective it's given me.

Back before I got pregnant, when the idea was a fleeting thought in my mind--an undefined "one day in the future"--I stumbled across an article in The New York Times about Crohn's and procreating.

"Risking Illness for Pregnancy," written by a Colitis sufferer (something I also, joyfully, have).

The column is hopeful enough. Worried that her cliched clock is ticking, she begins to question if she can get pregnant with a chronic illness, and if she even should.

"My doctor assures me that I don’t have to choose between health and motherhood," she writes, "that the odds are in my favor. But once your body has betrayed you, as mine did when my immune system began shredding my colon like cat claws on a sofa arm, I quit trusting the value of statistics to inform my decisions."

Exactly my (former) thoughts. I always assumed I probably couldn't get pregnant. I'd already come to grips with it, and, accordingly, convinced myself I didn't want kids anyway.

After more than a decade of being told I'm sick, sick, sick, of new diagnoses and health fears, it's not easy to convince yourself that something just might go right inside your body.

But the writer's struggle deciding whether or not to conceive wasn't what caught my attention. It was the comments. The insensitive, infuriating, self-centered comments.

Dozens took time out of their day to tell this woman--someone who's suffered enough--that her husband should just keep it in his pants. People who are sick shouldn't conceive, some wrote. Their poor children don't deserve the *tiny* risk that the disease could be passed on.

One comment:
"Adopt. There are thousands of ready made children out there. Parenting is just that — no guarantee that your own child is going to be special or wonderful and ps your condition may well be hereditary — I know Krohn’s is…"

I didn't change the spelling of Crohn's to exaggerate any ignorance there. They did that all on their own.

The author's point wasn't solely the fear of passing on the illness--it was also about the societal push for her to have children, and her own struggle with whether or not she actually wanted to. And, yes, adoption is a wonderful option for some. It was what I always assumed I would do one day, because of the aforementioned fear that my body would continually betray me.

But here I am, pregnant. Against all the odds. Despite precautions taken to prevent it.

The risk of passing it on is small--about 13 percent. But would I give it up because of that number? Hell no. Would I give it up because I honestly thought I couldn't give a child--Crohn's or not--a life worth living? Well, that's another story.

But I wouldn't take back a single part of the DNA my parents gave me. Crohn's included.

Every mother is facing a huge risk. There are infinite things that could be wrong with your child. There's not a whole lot you can do but prepare yourself for what's to come.

And if worse comes to worse, my mini-me will just have to deal with a mommy who uses the bathroom more often. And if--God forbid--I did pass it on, they would never have a better advocate, a better person to show them that it's not the be-all, end-all of life and wellbeing.

Do I wish my parents had forgone creating me, just because my aunt has Colitis, because my grandfather has Crohn's, because of the risk that it could have been worse, or that it could have been just what it is--a life full of stomach problems?

Not in a heartbeat.


5 comments:

rachel's friend emily,  July 12, 2009 at 5:02 AM  

"There are infinite things that could be wrong with your child. There's not a whole lot you can do..."

Exactly. When I was pregnant, my husband was so worried about Downs, even though we had a low risk. But I thought Downs was the tip of the iceberg of all the things that can go wrong. It was weird to me that he was so fixated on this. (Not to compare Downs to Crohn's or anything... just saying that it's silly to be so worried about one thing when there are a myriad of other ways our DNA can surprise us. I have two deaf cousins, so there is a 12.5% chance my son will lose his hearing. And we won't know about it for years unless we decide to do genetic testing.)

My mother has Colitis and two kids. I didn't even know it was genetic until you told me.

Nine Months to Life July 12, 2009 at 5:57 AM  

Well, doctors aren't entirely sure it's genetic. They know it's more common in people of Jewish descent--and also that it's from a combination of genetic/environmental factors.

My fiance is really fixated on the possibility of Downs, as well. What is it with guys and that disorder, I wonder?

Leah,  July 13, 2009 at 2:52 PM  

Autism runs in my fiance's family. But we're not afraid to have kids. (I know that's different than a chronic illness, but the principle is the same.) You'll just have to deal with any and all problems as they come. Your child will be the greatest thing on this earth because she/he is your child.

Anonymous,  August 28, 2009 at 2:56 AM  

I've never found someone so young talking about Chrons on the internet before, possibly because I haven't really looked, but still, you're the first.

My mum has always had stomach problems but as a nurse and a strong, stubborn woman she always just got on with life without complaining. Until three years ago when she ended up in hospital and had to have a large portion of her small intestine removed. She was diagnosed with Chrons, and the only reason it had got so bad was because she ignored it and never went to the doctor.
My sister and I (both in out early 20's now) found out it was hereditary and we could pass it on should we ever choose to have children, but I don't think that will stop me.

I just want to say thankyou to you for speaking aloud about your Chrons disease, it's just a reassurance for me that your body can't just be ignored or be something to be ashamed of.

Also, congratulations on your pregnancy, don't be too scared, it happens to the best of us.

Teresa,  February 4, 2010 at 9:17 AM  

Thank you for posting about chronic illness. It's something that I have had personal experience in, but as a daughter helping a mother. My mom was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome among other dietary restrictions (gluten, dairy). Helping her find the doctors that make help make positive changes in her life has been a true struggle. A lot of them brush her off and do not provide any information beyond testing her for every known disease. Yet knowing what she went through and realizing it could be my future never made me falter. I will do everything I can to provide for my child, to be judged for that based on medical history...is not only unfair but unnecessary. It's as if some of the general public thinks we ignore these risks..uh no.

Again thanks for writing about this, and I'm not sure if this is available in your area but in Seattle we have the Advocacy for the Chronically Ill, a nonprofit organization that helps battle misguided employers, insane insurance companies and educate the misinformed general public.

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