I’m starting to find that I have a hard time sharing my story with people, especially face-to-face. I really can’t put into words everything I’ve been through. I want everyone to know my struggles, and what Lyme is all about, but how do you describe it in one little discussion? I could talk for hours about the physical, financial, and mental hardships…the effects this disease has had on my relationships, my career, my social life, and my overall quality of life. So when people ask me, “what is Lyme?” - where do I even begin??
Last night Leigh and I had our 2nd Bible study, trying to foster some relationships in this town. I nearly convinced myself that we shouldn’t go, because I couldn’t bear putting a smile on my face and pretending to be normal, especially after a horribly frustrating day at work. It’s one thing to pretend like I’m fine around the people that understand what I’m dealing with to some extent, but it’s a whole different deal to be with people that don’t. Because if I let that smile slip, will they think I’m just a mean girl? Will they consider me high maintenance when I ask for a special, more comfortable seat? When I’m at a loss for words or memories, will they think I just have a low IQ? And when I turn down that wonderful piece of red-velvet cake, will they categorize me as a fad-dieter, without knowing that it would really give me a headache, stomach ache and heart palpitations?
Exposing my symptoms to others is especially difficult for me because it’s such an invisible disease. I often wish I had something more dramatic to show for the hell I’ve been through. If only I had solid, tangible proof that I’m as sick as I am! But because I look so normal on the outside, I feel like people will think I’m a big imposter when I explain what I’m dealing with.
Some of these feelings stem from junior high and high school. Do any of you remember those awful physical fitness tests? I HATED those with a passion! I’ve always been athletic, but I’ve also had weight issues my entire life – so those track races, jumping tests, and chin-ups in front of the whole class were my Very. Worst. Nightmare.
THIS, may as well have been........................……….....................THIS
For a few years I had major problems with my feet and had to wear custom glass orthotics to fix the problem. During one of those detested endurance tests, one of my orthotics cracked in half. It was so painful and prevented me from finishing. Afterwards, I walked into the locker room and overheard one of my classmates telling the other girls that I was faking it. Kids can be so cruel, right? Unfortunately, stuff like that sticks like glue.
These days, if I had a dollar for every time someone said, “you don’t look sick,” or “you look great to me” – well, I’d probably be able to pay off my medical bills. It’s true that if you saw me, you wouldn’t think twice about my health. You wouldn’t know I was in too much pain to choose the stairs over the elevator, that for the past two hours, I’d been fighting nausea, or that I’ve most likely been awake since 3am, unable to lie in bed from the pain. Yet every single day, no matter how badly I feel, as soon as I’m in the eye of the public – my mask goes on. It’s almost like my smile is an accessory that I force myself to wear each day. Makeup, check. Deodorant, jewelry, smile….check, check, and check.
Another phrase I’ve heard a lot is, “but you look so great (so happy) in all your pictures!” I mean, come on peeps, do you really think I’d be posting pictures of myself looking like crap on Instagram every day? Well, I suppose it works for Yolanda Foster. Then again, she’s gorgeous even when she’s in a hospital bed. Maybe if I had all the time and money to forego work and focus on treatment, that would be easier to do. But I don’t. And I certainly can’t show up to work looking like I feel. There have been a few times when I let my façade break away and almost every time, someone has commented on the way I look – sad, sick, unhappy – and I almost always tell them I’m just tired, because that’s just so much easier to explain.
This is me This is my mask
In some ways, I believe I’ve created a trap for myself. I want everyone to know what I’m going through, but I’m also very hesitant to share. I’m afraid that I’ll make someone uncomfortable, and even worse, that I won’t be able to fully describe the hell that I’m in. Because really, even if I had all day to talk about it, there are no words to fully explain what I’m going through. So at this point, I’m halfway in, halfway out. I am starting to share my story a little more, but I’m also doing my best at keeping my sunshine exterior.
So many of you have been kind enough to compliment me on my strength lately, but I have to admit that even then do I feel like an imposter. I know that I’m tough (and stubborn) and that not everyone could handle what I deal with every day. That it would be so easy to give up, but that I haven’t, even when that’s all I want to do. However, I’m learning that speaking hope is a lot easier than believing hope. My mouth doesn’t always say what my mind and my heart feel. Oh how I wish that weren’t so.
It’s funny, because from that moment in junior high, when I was determined to never let anyone call me a fake again – I now realize that that it is exactly what I’ve become. Not a symptom faker or an illness pretender, but an imposter of happiness and health. A phony, a liar, an every day actress. I won’t lie now, and say I haven’t lost some hope through all of this. But deep down, I do still have faith that, one day, the smile I put on my face every morning will be just as real as the clothing on my back.
