Thank you for your comment on my previous post. As always, I welcome any responses to what I write. To me, any response means that I’m effectively getting my words out into the world.
My last post did not mean to belittle Cancer as a disease. And yes, I realize that I was a bit over the top and melodramatic at the end. I truly debated as to whether or not I should respond to you. But then I thought that I should really practice what I preach.
And what I’ve been preaching lately is that it’s better to educate others about Infertility than perpetuating a myth.
In this case, it’s the myth that Infertility is not a disease, but rather just a “condition” that is a result of a “badly dealt hand” in life.
Or as Margaret Wente’s editorial in The Globe and The Mail indicates, “Many things in life are deeply unfair, and infertility is just one of them … … [In the] meantime, record numbers of people are embracing childlessness out of choice. It seems that one person’s deep unfairness is another’s blessed liberation.”
So, as an RN Case Manager … who has not only taken care of many Cancer patients at the hospital and has followed up with them on an ongoing basis after they’ve returned to their homes … let me take the opportunity here to dispell this myth.
1. Let’s first get our definitions straight.
Condition: a usually defective state of health (from Merriam-Webster Online Dictionary)
Disease: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms (from Merriam-Webster Online Dictionary)
Cancer: a term used for diseases in which abnormal cells divide without control and are able to invade other tissues (from the National Cancer Institute website)
Diabetes: a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin (from the American Diabetes Association website)
Infertility: a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse (as defined by the World Health Organization, as stated by the American Society for Reproductive Medicine website).
2. Now, let’s discuss the difference between a condition and a disease.
Many diseases started out as a being known as a “condition.” Diabetes was a “sugar condition.” Asthma was a “breathing condition.” It’s not until science began to do more research to determine the reason for its abnormal patterns in functioning that a condition came to be called a disease.
To me, this is why giving voice to Infertility and educating the general population is extremely important: so that more research can be done to discover how to effectively and consistently treat Infertility. And when I mean “consistently,” I mean that there should be a specific pathway (or guideline to follow) for treatment of Infertility. Much like there are standards of practice for treatment of the various types of Cancer.
3. Now let me discuss why I think all diseases aren’t fatal, as you’ve indicated.
Eczema isn’t fatal. Scleroderma isn’t fatal. Diabetes isn’t even fatal. What’s fatal is what happens if appropriate treatment is not carried out. That’s when other health conditions (or comorbidities) can add to the complications involving the disease.
Going back to Diabetes: If a Diabetic’s blood sugar isn’t controlled properly, then this could lead to diabetic nephropathy — or kidney disease. This is caused by the kidneys working overtime to filter out protein from the body. Continued overworking can cause kidney failure which could, again if untreated could cause toxicity in the body, ultimately leading to death. But would a pathologist consider diabetes as the cause of death in a situation like this? Likely no; it would most likely be kidney failure as a complication from Diabetes.
Now, substitute diabetes in this situation with, let’s say … pancreatic cancer. Again, pancreatic cancer could more likely be the complication in a fatal situation such as this.
4. So now let me talk about why I think complications from Infertility can be fatal.
First there’s the idea of an abnormal reproductive system; which, like most diseases, could be caused from a variety of different sources. In this case, it’s during any part of the reproductive cycle. But just for sh*ts and giggles … let’s say that — in determining the cause for Infertility — the woman discovers that she has Ovarian Cancer. Or we find out that the man has Testicular Cancer. Then I could logically assume (as you’ve pointed out) that Infertility can be related to Cancer (or vice versa, for that matter) and any complications that result from Cancer can be fatal.
Or … how about this? Let’s say, in the quest to have a child, a woman who has put her body at risk to become pregnant is suddenly more at risk during her pregnancy because of Pre-ecclampsia. And suddenly it becomes evident that a choice needs to be made as to whether to save the woman or her baby? I know women who have tragically been through this. And I hope, sometime in your life that you might have some empathy for them …
5. And finally, speaking of sympathy … I must point out that sympathy for my Infertility is not what I’m asking from you … or from anyone.
What I really want is empathy. And that would mean that I’d want the understanding from others that Infertility is a disease and it deserves to be recognize. It’s not something to be swept under the rug or ignored.
And quite frankly, I would hope that a person with Cancer would also want empathy rather than sympathy. For me, someone who is sympathetic can only “feel” pity and sorrow for someone’s misfortune. While a person who is empathetic has the ability to recognize, comprehend, perceive and directly feel the emotion of another. Seriously. I’d rather have someone recognize and comprehend how difficult it is to be in my situation than to just simply say (perhaps in their head), “Too bad, so sad.”
So here’s one last set of definitions.
Sympathy: the feeling or mental state brought about by such sensitivity (from Merriam-Webster Online Dictionary)
Empathy: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner (from Merriam-Webster Online Dictionary)
So hopefully you now have a better understanding of why I wrote my last post.
I’m not asking for more recognition than what Cancer, with its multitude of community support, already has. I’m just simply asking for recognition.
And finally … just so you know. I am a survivor of Infertility … not because one of my parents suffered from Infertility (because my Mom did ) … and not because I ended up having children (because I didn’t) … I consider myself a survivor because I was able to sustain years of treatment for Infertility and came out the other end of a verrry long tunnel with my dignity (relatively) intact.
Best of luck in wherever your life takes you,
Emily outs her secret
Emily asks people to pledge
Emily makes you go “Hmmm … “
13 Replies to “Practicing What I Preach”
Very well said. I feel better educated and I thought I understood. Now I really feel that I do, as much as someone who is not 1st hand experiencing it.
Thanks for writing all of this. It is difficult to articulate the comparison of infertility with diabetes or cancer, but all of us who suffer from infertility definitely agree that the comparison is merited. You’ve helped to articulate why this is.
But what Curious also seems to miss is the difference in having something wrong and fixable with your body (like diabetes — you can monitor it and get on with your life). Infertility isn’t like this. An infertile goes through years and years of tests and treatments and drugs and the dramatic upset to one’s life and one’s future. But there isn’t a ‘fix”. You have no moment of “oh, so that’s the problem, I just test my blood levels a few times a day and I can emotionally get back to your life.’ With IF, it is much more like cancer in that you go through tests and drugs and treatments but you can’t get on with your life. You don’t know what next month will be like, needless to say next year. The emotional stress of this is beyond explanation.
I had a very serious injury that was life threatening, and I have to do things daily to make sure I stay ok. It was a crazy experience, but SO different from IF in that it happened, I got fixed, and now I just watch to make sure I stay this way. I felt fragile for a while, but as the months rolled by and I learned to accommodate, I don’t stress about it any more. It is always there, but it doesn’t define my tomorrow or the rest of my life.
But infertility does. And THAT is why it is a disease to me. If I could monitor my blood sugar levels 5 times a day for the rest of my life in exchange for a baby, I’d do it in a heartbeat. All of us IFfers would. I wish it were that simple. I’d even go through a round of chemo or two if at the end of it I could get back onto the life I had intended to have (but I’d harvest some eggs before hand!)
all my best, inB
Ahh empathy – so rare for the infertile to be on the receiving end of it. Well said Emily.
Well I had an entire comment written, but somehow I got flipped back to FB and lost it. Ugh. Now I know I won’t remember everything I had typed, but essentially it was to thank you for an excellent post along with the one before. You are so eloquent with your words and have such a gift for conveying what so many of us IFers feel. I appreciate that you continue to educate people on this disease, because honestly I am getting to a point where I just want to forget about it all and move on. Yeah in case you haven’t read my private blog – bad news yesterday. However it looks like just as you move back to MI, I’ll be moving to Chicago.
The thing about diabetes is that I would know what was wrong. I would know exactly, on a cellular level what had happened, what the protocols were, and how to if not fix it, then how to manage it and live a reasonably normal life.
I don’t have this, I have 5 dead babies and 3 years of my life gone, which seems to be a high price to pay for a “condition”.
Em…as others have said…you wrote this so well. I find myself just nodding my head in agreement with you. Yup, we’re both nurses…we’ve both struggled with infertility. We may have our paths take us various ways….but the one thing I know is that you are empathetic, kind, knowlegable…and by all means a survivor. Shame on anyone who thinks otherwise of you. ((hugs))
Ah yes, I forgot to ask? K mentioned in her comment that you might be moving back to MI? Are you? Oh I would be so excited to have you close by again! Then I’d get off my lazy butt and we could grab some coffee or something yummy sometime 🙂
Well said, as always, Emily! Love how clearly you’ve defined the terms!
Hear, hear. Well said!
Fatality isn’t required for something to be a disease. However you turn it, IF is rather life-altering, whether treatment ultimately works or not.
(Arrived from the Crème de la Crème list)
Great post. I find it totally bizarre to think that anybody could think that a dysfunction of a physiological system could be anything but a disease.
(arrived from creme)
have been reading some of your old posts after stumbling onto various blogs dealing with infertility… thank you for sharing your story, your courage, your experiences and knowledge. i can relate with you on so many levels esp. what you have posted (& of what i’ve read so far). i take great comfort & huge relief knowing that there are folks like you are there to help us who are in similar situations to cope, live and carry on. thank you so much, mary ann