It’s Probably Not Cool to Be Infertile
New York Magazine had an article about “prestigious” diseases, or the hierarchy of disease. The author explains,
Physicians were asked to rate 38 categories of diseases on a prestige scale from 1 to 9, based on how they felt health professionals viewed the disease-category in question. In all three surveys, there was stability at the top: Leukemia, brain tumors, and myocardial infarctions (heart attacks) were the top three in all three surveys, though the order switched around. At the bottom were fibromyalgia, depression, anxiety, and cirrhosis of the liver.
I’m not sure where infertility falls on the actual prestige list, but I’m going to guess that it falls close to the bottom. The article goes on to summarize what gives a disease high prestige (at least, in Norway):
- “Non-self-inflicted, acute and lethal diseases with clear diagnostic signs, located in the upper part of the body, preferably the brain or the heart.”
- Diseases “associated with active, risky and high technology treatment leading to a speedy and effective recovery.”
- Diseases “associated with young patients, patients who accept the physician’s understanding of the disease, and whose treatment results do not involve disfigurement, helplessness or other heavy burdens.”
Infertility is not lethal and it involves organs in the lower half of the body. It definitely can be treated with what I would consider high technology, though perhaps IVF is not as cool as robotic surgery. And while infertility involves young patients in the sense that it is not a geriatric disease, I get a sense — based on my own experience — that people find family building a burden, whether that’s covering for them at work so they can get treatments or accommodating time off for maternity leave on the other end.
We want people to have babies, we just don’t want their babies to impact us in any way. It goes hand-in-hand with the societal message of children are precious angels and disruptive brats at the very same time. Infertility follows that duality of everyone should want a baby but no one’s attempt to have a baby should impact anyone else around them.
The most interesting thought in the article is that this idea of disease prestige impacts how doctors practice medicine. How they may subconsciously make decisions on your treatment. It’s not just what area of medicine draws the most people but how much energy doctors expend on what they perceive to be a simple case vs. a difficult case or a known fertility issue vs. an unknown fertility issue.
What do you think? The article gave me a lot to chew on, especially the role the patient could (would? should?) play when suspecting this sort of prestige bias.
11 comments
I would imagine that infertility was not included in the survey, given that it’s generally perceived to be a women’s problem. And nobody starts trying to assess the problem with sperm count (near the beginning, yes, but not before a woman’s menstrual history is evaluated). I’m not really one to find sexism everywhere, but I think there was probably an implicit bias in this survey.
I bet, however, that infertility would rank at the top of the prestige scale if you surveyed only OB/GYNs and maybe urologists?
What I find particularly depressing about this is how mental health concerns are rated so poorly. How are we meant to erase the stigma in society in general if this is how doctors think about things like depression and anxiety?
I agree that infertility is not high on the average doctor’s list because having a baby is not in many’s eyes a life or death thing. The idea that you can physically survive infertility as opposed to heart attack or leukemia. But the way I look at it, that makes RE’s that much more special. A lot of the ones I’ve known have a true passion for what they do and for helping people achieve their family dream. They didn’t initially get attracted to that specialty because people flocked to them when they mentioned it at a cocktail party when they were 21.
Fascinating. I’d never thought of a hierarchy of disease prestige, but I do see now that it exists. I’m chewing on where infertility would fall. Certain celebrities give it a prestige boost, but some also think much of infertility is self-inflicted (why’d you wait so long?).
Interesting. I still can’t quite get my head around the idea of infertility as a disease. For sure there are diseases that cause or exacerbate infertility, but that doesn’t seem like quite the same thing. Maybe it’s because I have a variety of infertility that isn’t explained, can’t be cured and can’t even really be treated with any sort of efficacy. I see infertility more as a disability than a disease. Even if we are talking treatments, how many treatments are there that effectively fix what ever it is about people’s reproductive organs that makes them not work properly? The only one coming to mind is surgery to fix a blocked tube or other limited physical problem. You do it once, it’s done! Most other treatments seem like adaptive aids (to borrow a term from my field) to help the body do what it should, or to bypass one faulty system altogether. For example, I could possibly get pregnant through DE IVF, but that wouldn’t change the fact my ovaries are not that good at making eggs. If I have a “disease” the actual disease is not being addressed by the “treatment,” at all. I don’t personally feel like I have a disease, which is maybe the other reason I struggle with the idea. I’m not sick; I just can’t (easily) do something (get pregnant) that (many) other people do (fairly) easily. It’s an interesting topic…
Oh Mel, this is a soapbox for me.
Western medicine trains its students and practitioners to focus on the ailment, not the whole body. Cancer is cut out and/or irradiated; heart attacks are treated with surgery and exercise (diet change too). What is lost is the whole body, more broadly the whole person. Mental illness is not taken seriously. Diabetes is seen as a call to drop the fork and hit the gym. And infertility is something you brought on yourself. Medicine likes black-and-white thinking with clear cut solutions to problems. The idea of uncertainty and, worse, better worse from treatment, is something most physicians struggle with.
It’s good this stuff is being talked about. But for me it’s not terribly surprising.
Infertility is a weird one, too, because you (my partner) may have a medical problem that causes us to experience infertility, and I may be the one who undergoes treatment.
Ranking diseases on prestige?
I would never have considered innately glamorous in being sick….so much to think about!
This makes me even more thankful for the excellent RE/clinic that finally worked miracles for us.
I hate that with infertility there is often blame–she’s too old, she waited too long. Of course this isn’t so much the case with younger infertile women. But once you’re over 35 it’s too bad so sad–I don’t feel a lot of empathy. I also think REs are too quick to blame AMA and don’t bother to investigate the actual details of infertility, which probably contributes to the issue of not considering it a disease (at least for us ancient women). Yet people with type 2 diabetes etc. get insurance coverage etc. even though it’s largely lifestyle driven…and until infertility is viewed as a disease routine coverage won’t happen. Ha, isn’t that cute that I’m even thinking about that when the repubs want to take away maternity coverage.
yea I agree that infertility has a negative association to it – that we as women wanted to have it all, and waited too long to start a family. So often the issue is assumed to be the woman’s fault. I think there is still something shameful about infertility, though I am happy that some celebrities are starting to speak up about it and hopefully one day it will be more in the open!
I agree. If the doctors don’t give mental health issues weight, who will? Maybe this is another bias in that psychiatrists were not included?