Labels & Diagnoses

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

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5 Responses to Labels & Diagnoses

  1. :) Thank you, well said. I am a parent of an OI Type 2 Severe Child. Even at the young age of 6yrs, she insists on doing things herself. She knows what she has, and what can happen, but I would have to assume that she has not labeled herself with it. She is still learning her limits, does not walk and just now learning to army crawl and pull to standing. She sees herself as she sees everyone else right now----her peers have been with her for 3 years now, and all of them fight over who is going to play with her or sit next to her, just as any other kid would. But I fear that soon she will become very frustrated (we have seen some of this already) and realize that she isn't like all the other kids. My hope is that she takes this with courage and turns it into more determination(as she is very determined), rather than give up and give in to her condition.
    I thank you for making me realize, that even though she is not an adult, she is the one who will decide how she feels about herself. And what I have to do as a parent to overcome my "protectiveness" and help her become a happy, independent person.

    1. ****Correction---Type 3 Severe----sorry didn't realize I typed 2.

    2. Samantha! Thank you for sharing your comment with me as it made me smile, but also made me think about some of the fears parents have that from the perspective of the child - we don't always realize. I grinned widely when you said that your daughter gets fought over by her classmates and already shows a lot of determination... it reminds me so much of myself in elementary school!

      Your fear is absolutely valid. Because it made me think back to the times when I first began realizing that I was *different* - but not just visually but in the way my actions were different from my friends and peers. Undoubtedly there were many frustrating moments. (And in future posts I will be happy to share some of those!) The thing that gives me greatest hope for you daughter is that from what I've seen and experienced... determined people don't typically give in or give up on much of anything. They're too busy taking chances and all that is put in front of them!

      p.s. I'm not sure you'll ever be able to over come your "protectiveness" and I kinda hope that you don't since that's what I hear parents gotta do. But it sounds like you've already done something right to help her see things through with determination. :-)

  2. A lovely and balanced point of view :) I have OI and for me it's clear that OI is just another label/identity marker that we can claim or not claim as we move through our lives. I see it in the difference between myself and my identical twin - OI has become much more significant in my life since a) mine got worse again, b) I had a baby who has it. it's a huge presence in our family now. But for my identical twin who is more well and hasn't got kids (partly because of OI mind you!) it's something she doesn't foreground at all in her life. we choose the labels that help us and whether they help us or not changes over time... In fact I just had an instance of this - my twin texted me asking 'what type are we?! i'm at the endocrinologist'. she doesn't even know her type :) I replied that she is type 1, with a mutation on the COL1A1 gene, and that she only has a clinical diagnosis but a DNA result via me (since we're identical). as you can see, we're at totally different levels of self-labeling here at the moment!

    1. Heyo, thanks for the comment! You bring up a great point that I've kinda had in the back of my mind on this topic but wasn't sure how to word it. But your relationship with your identical twin exemplifies what I wanted to say very well:

      It's like if we don't find ourselves "fighting against" something it does not have as 'present' a role in our lives. I can say that about many other aspects about my identity! But I'm sure that had you asked the younger version of myself, say middle school -- I probably would have told you that O.I. was a big part of my life because of how frequently I fractured at the time.
      I appreciate you sharing your story and relationship you have w/OI in terms of yourself & the rest of your family :)


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