August 13, 2015

language-matters

I love this Forbes article for its title, “Everything About Miscarriage Hurts, Including The Term Miscarriage,” which acknowledges that everything about miscarriage hurts and for its advocacy to change the painful terminology of pregnancy loss. Miscarriage. Lost pregnancy. Chemical pregnancy. Blighted ovum. Spontaneous Abortion. The most painful term I was ever labeled with, after multiple miscarriages? Habitual Aborter. ICD-9 Diagnosis code 629.81. Habitual Aborter, can you even believe that? Like I made it a habit to get pregnant, then abort my babies like I might make it a habit to grow my nails long just so I could bite them down to the quick. I agree with the author, David Sable, a former fertility doctor, that there really isn’t a good term, so you kind of just settle on the least bad, which I guess, to some degree, is different for everyone.

The discomfort of miscarriage terminology has always gone a step further for me. I’ve felt okay—relatively speaking—with the term miscarriage because as painful as it is, it is not as awful, and at least more accurate, than the other label it nearly always gets lumped in with—infertility. Infertility is generally (including by The World Health Organization) defined as the inability to achieve pregnancy after one year or more of unprotected sex. So at best it is a misnomer for women like me who got pregnant quickly, but at worst it is a slight to what we have actually experienced, the death of a much wanted and loved baby growing inside of us. Which, let me be clear, is not meant to diminish the pain of those not getting pregnant at all. Both experiences are agonizing, but they are indeed different. At the very least, if we’re going to generalize, why not use the term fertility, the positive counterpart to infertility which conveys a message of personal deficiency to those labeled with it?

Some definitions of infertility go further to include the inability to “retain a pregnancy” or “result in a live birth,” but at this point it becomes semantics. Any difficulty with the process of reproduction is just that—a reproductive system disorder. How about a term that reflects that? For god’s sake, it could be as simple as RSD. There are hundreds of cardiovascular disorders, we don’t lump them all into one hurtful category of heartlessness. We call them cardiovascular disorders and term them what they are: mitral valve prolapse, atrial fibrillation, cardiomyopathy. Disorders of the digestion system are not the same thing as eating disorders, and we use medically accurate terms to describe them: gastroesophageal reflux disorder (GERD), peptic ulcer. Why different treatment for the reproductive system? (And why the different treatment in insurance coverage either, but that’s another discussion.)

Wayne’s and my reproductive system disorder is a chromosomal reciprocal (or balanced) translocation, a mouthful to be sure but a lot more accurate than infertility and certainly less cruel than habitual aborter. In fact, a large percentage of miscarriage patients could be accurately described by RSD, chromosomal anomaly, or RSD, unspecified. Likewise, terminology regarding patients unable to conceive could commonly and accurately include RSD, anovulation (not ovulating) or RSD, oligospermia (low sperm count), or RSD, unspecified. Yes, terms like oligospermia seem weird at first, but they wouldn’t if they were used all the time. (Like “Google” and “Twitter,” for example!)

Even reproductive treatment terminology is painfully skewed. The accurate and reasonable term Assisted Reproductive Technology (ART) exists; if you Google it you’ll get about 815,000 hits. Now Google Infertility Treatment: 22,400,000 hits.

Only with my recent internet and volunteer activity with Resolve, The National Infertility Association, have I begun to use the term infertility, telling myself it’s for the sake of simplicity and a means to an end of increased awareness and support for reproductive disorders and trauma. Still, I cringe every time. As a society, we’ve largely replaced hurtful terms such as mental retardation with cognitive disabilities or challenges, handicapped with special needs, and the move is on from learning disabilities to learning differences. It is time for reproductive system disorders to be termed as such, starting with putting infertility on the list of labels to abort.

LP