Because you don’t know what it’s like until you’ve lived it

The more I reach out here, the more stories I read, the more experiences I compare to my own, the more I realize that we, as people dealing with infertility, going through treatments, suffering loss after loss, are not only battling infertility itself.  We are battling the ignorance and hurtful assumptions that exist in the outside world about what it is we endure on a daily basis.

How can I explain this to someone who hasn’t experienced it?  The seven out of eight couples who don’t think twice about making babies, who do it by accident, who don’t can’t appreciate what it feels like when it doesn’t happen so easily.  To those who say we’re buying our children or implore us to “just” adopt.  Mel used the analogy of a person with poor vision making the decision to spend money on glasses or surgery, rather than employing a sight dog.  She admitted it’s not a perfect analogy, but when trying to explain why we would subject ourselves to the torture of fertility treatments, why we would spend so much money with no guarantee treatments will be successful, to someone who doesn’t understand, I think it works.

I have another (imperfect) analogy.  In my former life, I taught children who were deaf or hard of hearing.  Many of these children used cochlear implants to detect and interpret sounds.  It required surgery and an expensive implantable device.  The surgery and use of the device were controversial in some circles.

Why not just teach your child to sign?  There is a whole culture of Deaf Americans who would accept your child as she is.

But these parents were not part of the Deaf culture, and teaching their child to communicate exclusively through sign language would require extended family members and friends to learn the language as well.  It would require their child to have an interpreter at doctors visits, in the classroom, and when ordering at a restaurant.  This was not the life these families envisioned for their child.

Having a child who was deaf was not something they chose; it was something that had happened to their child.  They grieved.  But they could still choose to give their child every opportunity at the life they wanted by electing to spend the money (or, in many cases, have their insurance pay) and go through the ordeal and risks of surgery, followed by years of therapy and specialized instruction.  For the parents I knew, it was worth the risks and the money to have their child tell them “I love you,” to hear about their child’s day, for their child to hear a warning, laughter, or music.  Something as simple as a child turning his head when his name was called could bring tears to a parent’s eyes.

All I want–all anyone who is willing to suffer the expense and pain of fertility treatments, even knowing they may not work–all we want is that same chance at the life we imagined for ourselves, the lives our parents probably dreamed for us, just as parents of a child who is deaf dream for her to listen and speak.  As long as the technology exists, as long as there are professionals willing to help us achieve that dream, what right does anyone else have to take it away from us?

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20 thoughts on “Because you don’t know what it’s like until you’ve lived it

  1. Excellent analogy! And how come I never knew you used to be a TOD? I’m a peds ci audiologist. Maybe your analogy is why I’m lucky enough to have such supportive coworkers. They can appreciate it on some level.

    • Or maybe it’s just people who choose to work with families and children who are more understanding. I currently work in early intervention, and a lot of my coworkers know about our situation and are also very supportive. Which I am so thankful for!

  2. YES. This is such a good post. I have been searching for a way to explain to family and friends in a way they would understand. Thank you for providing it!

    • You’re welcome! I think it’s an analogy many people still may not know about. It’s funny, I used to be kind of an advocate for cochlear implant users, and lately I find myself becoming an advocate for infertility awareness as well. Neither of these are roles I would have ever guessed I would have taken on before they were sort of thrust upon me. But I find myself feeling pretty comfortable in this role, somehow.

  3. I like this analogy. I’ve not had anyone ask me why we would pay so much money for something that may not have a positive result, but I always figure I would ask them (if they have kids) to imagine their lives without their children, and what they would sacrifice for them. Why is it any different just because my kids aren’t here yet?
    To the “just adopt” people I usually try to explain all of the rigamorole you have to go through to “just adopt” and that it really isn’t as simple as you think. Sometimes I want to say “why don’t YOU just adopt?”

    • I don’t think anyone has asked me this question directly, either, but I’ve been reading/hearing quite a few rumblings lately. And, I guess as a sub-category, my recent experience with total ignorance about male factor infertility has my antennae up, too. I think it’s important to be prepared, just in case someone does make some off-hand (even well-intentioned) remark, so we don’t get caught off guard.

      • We are currently facing an issue of whether IVF is going to be considered a “medical expense”. My husband lost his job nearly a year ago and filed bankruptcy. The problem now is that basically ANY money he makes from now on will go straight to the trustee, leaving us with very little wiggle room to save money for a procedure, and the lawyer has to check to see if they consider IVF a medical procedure. It makes me so mad I don’t even know how to respond

  4. Pingback: All I can do is write about it « Play It All Night Long

  5. This is a great post. I really wish I could have explained it that way to my friend who constantly urged me to adopt. I agree with Theresa as well — I wonder what my friend would have sacrificed to have her child. This is the problem when people just talk and don’t take the time to really consider what it might be like to face what we face. Unfortunately for us, oftentimes their thoughtless words cause us even more pain & isolation.

    • Thank you. I just think it’s such a shame that there’s not more awareness/information/education out there about what infertility really is. That it’s not just women who didn’t start trying until their 40s who suffer from it. And especially, that it’s not just women. I’m sure there are other analogies that work, too, but this one is close to my heart.

  6. Wow, so so true, everything you wrote had me nodding like a dashboard bobblehead. I’d like to print this out as a just-in-case handout should the “just adopt” comment ever be hurled in my face. Well, techinically, I’d like to first throw a drink in that person’s face, preferably something red and staining, and then give them the handout. lol.

  7. Great post. This is a wonderful analogy. People can be idiots. Fortunately, it really is not always out of malice. I spoke with an old friend this weekend who recently wrote to me that he and his partner couldn’t have children and they had discovered that he was the reason. They are crushed. At one point I found myself wanting to make him feel better and beginning to list all of the “positives” of living child free (he loves nightlife, film, live music, etc). I stopped myself and then later felt like an ass for even thinking to go there. I like those things too. I live with plenty of barriers that make parenting challenging. However, none of that stopped me from pursuing it. Hard to believe but sometimes even those of us who KNOW may need powerful lessons like this one.

    • Thank you.

      I find myself constantly checking myself, even when leaving comments or writing posts. We all know that feelings on this can be fragile, but even we (as you say, those who should know better) can trample on each other without realizing it. I’ve probably done it, too.

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