My Lie. a.k.a...My Life.

To the people who care about me most, and whom I consider to be my friends:

I haven't been completely honest with you when you ask me how I'm feeling. I lack the courage to tell you the truth in person, but I still want to share with you. So I wrote this letter. Please read it.

I'm angry. I hate what this is doing to me. I hate that I wake up with a handful of hair on my pillow every morning. Yeah, I lied when I said it was just every now and then. Some days are better than others, but it still happens every day. I look in the mirror every morning, not to check and see whether or not I have a zit like I used to, but to make sure the thinning of my hair isn't noticeable. I spend 20 more minutes a day now fixing my hair than what I used to do. I want to make sure that you can't tell my hair is falling out one beautiful curly strand at a time.

I hate that I can't tie my shoes most days because my feet start to swell and it hurts. Yeah, I said that the GF diet is helping...and it is. But not as much as I've led you to believe.

I hate that I honestly don't know who to call right now after midnight to come give me a hug. I know there's at least six people who would drop everything and come over here ASAP if I called and asked, but I feel silly for crying over this. There's so many other people hurting in the world, who am I to make you go out of your way to come comfort me?

I'm scared about my second opinion appointment. I'm afraid she'll tell me it's something worse than Lupus. That I have cancer, or am going to die. I want to live a normal life. God, just let me live a normal life.

I feel alone in my suffering. Immediately after my diagnosis, I was flooded with "praying for you" cards, and "hope you feel better soon" stuff, I even had one person pay my rent for the month I was too sick to work. I know I am loved. But I love my friends as well. And I don't want them to have to suffer along with me.

So when you ask me "how are you doing today?" I lie. I lie to you not because I want to, but because I feel like I have to. I feel like if I were to tell you how I'm feeling, you wouldn't be able to handle it. I feel like if I told you the truth, all I'd get from you is a sympathy look. I hate that look with a passion. I don't want your sympathy. I want your friendship. I want you to call me, and to hang out with me. I want you to make me forget about my insecurities for just one night. I want to have fun, and to pretend to be a normal 22 year old female.

But I'm not normal. I'm sick.

There's five stages of grief. Denial, Anger, Bargaining, Depression, and Acceptance.

My denial happened when I first started having problems. It ended the day I woke up with legs too swollen and stiff to get out of my bed. I was stuck there until 1 in the afternoon before I figured out a way to get off of my top bunk. I used a sheet and tied it around my waist to levy myself down.

Right after I got diagnosed, my parent's met me in the parking lot. They gave me a hug. And then took me out to eat. My anger started when I was reading to them out-loud the "pamphlets" my rheumatologist gave me. My anger continued to swell to the point that I could barely stand it anymore. I avoided church, I avoided my friends, and I especially avoided God.

There was one point when I pulled into chick-fil-a's parking lot because I was crying too hard to see the road. I sat in my car and screamed at God telling Him how unfair he was to put me through this. How I didn't deserve this, how I'm a decent human being.

I'd be lying to you if I told you there are no longer moments when I get angry. If I stop and let myself dwell on it long enough, then I can feel my anger swell. When I hear someone tell me "Amanda, I'm so sorry this is happening to you. You're such a sweet girl" I usually get angry.

But today, today someone told me that and I did not feel anger. All I felt was sadness. I am mourning the loss of what I could have been. What I could have accomplished if I no longer had the label "Lupus patient" attached to me. The places I could have gone if I had no food allergies. The person I could have become. The people I could have reached. The things I could have done if I still had my old energy level.

I am not the same Amanda I was 7 months ago. I'm not in denial over whether or not my sore knee is something to be worried about. I am no longer ignoring the excess amount of hair that comes out when I take a shower. I am no longer attributing my fatigue to working too much. I no longer think that my swollen legs are because of bad shoes or being on my feet all day.

You want to know a secret? Earlier this week I got curious as to how much hair I was losing. So after I took a shower I scooped up all of my hair, and instead of throwing it away I wrapped a tissue around it and put it in my room. Then later when I started to brush my hair, I took extra care to make sure I got every strand. And then I put it into the bag. I carried that bag around with me all day long. Tried to make sure I caught every spare strand that fell off of my scalp. By the end of the day, I had to use a second bag. Both bags are now in my room.

I started counting the strands of my gorgeous hair. I've never felt so ugly and so completely hopeless before.

I'm sick. I have Lupus.

And I am in no way, shape, or form okay with this. I am mourning the loss of Aunt Tonabell's home-cooked bread. I miss waking up in the mornings without stiff joints. I miss the days I could vigorously brush my hair without having to clean it out every 6 strokes because my lost hair is covering the bristles. I miss those days.

I miss going to bed with the only major thought on my mind whether the next day would bring good tennis-playing weather. I miss being able to do all of my grocery shopping in one store. I miss the simplicity my life used to have.

I miss feeling accepted by the people around me. I don't like being gossiped about. I don't like the questions of how I am feeling. I don't like it because it means I'm no longer the same person I was before this diagnosis. I'm different. And I don't feel like it's a good different.

My life has become so much more complicated in the past few months. In fact, it's so complicated I don't even know how to describe it. The simplest way would probably be to say that I don't trust you anymore. Not the same way I used to.

In order to tell you everything on my mind, I'd have to share more of myself than what you are ready to accept. What I'm going through is a process, and sometimes I don't think you are walking through this process with me. So therefore, I don't tell you. Not because I don't think you care, but rather because I don't think you are ready to hear yet.

The only problem with this is that I am hurting. I want to tell someone everything on my mind. I share some with everyone whom I trust, but I only share bits and pieces. I pick and choose what to tell you.

I beg of you, walk through this process with me. I want a crying buddy. But I love you too much to hurt you. I know you are ready to listen, but I don't think you are ready to hear. So until you are ready to hear....to truly hear what I'm feeling, I will only tell you bits and pieces. I will continue living my lie. I just pray that you love me enough to one day gather enough courage to be my crying buddy.