Weight: 246.2 lb
Funny thing about me- the girl who puts her weight on the internet, the girl who shares her whole life story with strangers, the girl who will overshare personal details at the slightest interest or provocation- a funny thing you might not naturally know or assume is that I can, actually, be a fairly private person. No, really.
If you know me, even a little, this seems a bit contradictory, or at best odd. As I’ve mentioned, I have a habit of publicizing things plenty of ordinary folk would not. I overshare. I’m overly candid. I’m a bit of an open book. But then there are some things I don’t talk about, some things I’ve learned NOT to discuss. When I was younger, this was my struggle with depression or isolation or other teenage angst-y things. They were unpopular subjects that usually brought on a wave of (unwanted) concern and (unsolicited) advice and at times (unwelcome) instructions, demands even, for how to handle my emotions or my relationships or some other area of my life. If I’m nothing else, I’m unrelentingly independent and probably overly proud and I wanted to handle my emotions myself, process them myself, before I allowed someone else to interpret them for me. I knew that there was help that others were more than happy to provide and that life, at times, did not have to be as difficult or as painful as I was making it, but I felt the need to “tough it out.” I really didn’t trust others to see me in a different light, a more honest light even, and still love me the same and I somehow felt that revealing all my thoughts and feelings and weaknesses to others would taint there view of me.
Oddly enough, I reacted to my MS diagnosis much the same way. When I first got the news, I shared it with one sister, who did what any good sister would do and at first tried to be plucky and positive (Oh, no, it can’t be that… well, even if it is, you’ll beat it…) and then, giving in to my desire, just cried with me in the way that only your sister can. It felt so good to share with her; I felt like she “got” me. Then on to my other phone calls- my other sisters, my parents. As there is in any family, there was some drama involved with the sharing of this news. I didn’t call my in-laws, leaving that to my husband, and he didn’t want them to talk to me about it initially, wanted them to respect my privacy, wanted time for me to process the news and so my diagnosis became this awkward “elephant in the room” scenario. Some of my family members wanted to share with individuals in their church, people that they had developed relationships with for over 20 years, people that had, at different points in my life, been instrumental to my development and I wouldn’t let them. My overly fierce privacy reared it’s head again.
I was selective in who I wanted the information to go to- my pastor and his wife can know I have MS, but the church elders can’t. My friend and department chair can know my diagnosis, but my co-workers can’t. My immediate family can know, my extended family can’t. I knew that people were concerned, that they loved me, that they wanted to help, but I also felt like a topic of gossip. Sharing my diagnosis as a “prayer request” felt like christian code for “tell everyone this sad and shocking news so they can pay attention to you in a way they never were before.” I remember distinctly telling my mom that unless my family had been asking for prayer for me as I was planning Prom last year or sending up praise reports about the bonus we got when my school met AYP, I didn’t see why they’d only share this information now. It felt as if my MS was going to be the defining thing about me now, I was going to be “MS girl”, I was going to be the story everyone told to someone else when they got a bad medical diagnosis. I was terrified that it would change the way people viewed me. And so I stayed quiet. But news of my diagnosis didn’t stay quiet.
I suspected that my principal knew when he kept popping by my room to give encouraging little pep-phrases and stopping me briefly in the halls to ask how I was doing, how I was feeling. Shortly after this, I found out that my department knew. Someone had apparently mentioned MS as one possible diagnosis in the lunch room and then word of the confirmation eked out though I still don’t know how. What could I do? I can’t control MS any more than I can control who knows I have it, so I need to get used to this helpless feeling. But every time there’s a reminder of this, it still irks me a bit.
I know that I am going to have to get over this. I will have this disease for the rest of my life. Talking about it here is the first step I’ve taken to any kind of public acknowledgement and probably toward acceptance (Well, that and my daily shot. You can’t help but acknowledge that you have MS when you stick yourself with medicine everyday). I will have to tell my grandparents and my aunts and uncles and I should do that soon. But I still dread it. I still dread becoming “MS girl” and letting a disease I have no control over become the label I wear. I’m afraid that my grandparents, whose memories are failing, will only remember this fact about me. I’m afraid I will be reduced to this illness because bad news sticks so much more readily than good news. And that’s a problem I haven’t solved yet. Instead, I’ve just become overly private as I try to sort out a solution.