A blog I wrote a few years ago…
At age 11 I was diagnosed with Lupus SLE. Eleven years old. I hate telling people I have a chronic illness… Why? Because people don’t understand and instead of doing a little research, they ask inappropriate questions, or say discouraging statements. Trust me, google IS your friend. It’s a difficult topic to discuss when people have so many questions but they don’t understand. The fact is that with an autoimmune disease although you may not look sick, but you feel like death is setting in. Someone told me I was on my death bed when they saw me in the hospital the week I was diagnosed.
Sometimes I don’t have the energy to do everything I want to do, which goes back to Christine Miserandino’s “Spoon Theory.” I have to choose what I do with my day wisely, as I may not have enough energy to complete everything. This doesn’t happen too often, only when lupus is active. So many times people with an autoimmune disease have to make it seem as though you feel fine, and everything is okay, because the reality of it all is that it’s hard for a healthy person to understand what we go through so we downplay our symptoms or act as if we have no symptoms at all…maybe that’s because people with an autoimmune disease “don’t look sick.” I wonder, if we looked how we felt, would they partly understand?
Having a chronic illness at a young age is difficult. I would do anything in my power not to take my medicine, to not follow doctor’s orders. I mean do you know that you can possibly make something better, but in turn be making some symptom worse? What do you mean I may gradually lose my eye sight from this medicine?? And you want me to take this crap?? I’m better off with no medications at all. That’s how I felt. I’m still young, I’m still a semi-rebel at heart. I still want to be able to get piercings, and tattoos and dye my hair red without wondering…”will I be sick tomorrow?” You never really understand that you HAVE to take care of yourself until something drastic happens, and trust me, you DON’T want to have to learn the hard way. I never want to see another flare in my life. I am so helpless. Some days when I feel the “tiredness” wearing down on me, I lie down and think about life, ask God “Why me?” I listen to “Unpretty” by TLC, and at the end of those thoughts I have a mind over matter attitude. I can’t let this control my day, my actions, my plans, or me! I pray, and then I get up. My mind over matter trick doesn’t work all the time, sometimes I let my flare get too far and in comes the loss of appetite, weight loss, achy joints and feeling of death. My pride messes with me; do you know who I am? I’m not supposed to let people see me out of my element like this. In sets the reality that I NEED to take care of myself. Most girls have a purse filled with MAC and lotions, don’t get me wrong I have that too, but in addition I also need to carry thermometers, ankle braces, and medications. Yeah, what a beauty, big orange bottles of pills jiggling around and embarrassing me in front of others as I look for my wallet. Nice.
At the end of the day you have to love yourself the way you are because someone, somewhere has it so much worse. I see myself as fortunate, I’ve had lupus since I was 11 years old, I’m almost 24 now… I’m not as sick as the doctors say I SHOULD be and I thank God for that. Sometimes it actually backfires because I don’t have flares often, so I don’t always recognize the symptoms of a flare until it’s at its highest point which is fevers, complete exhaustion, painful joints, loss of appetite, and weight loss. We all need to realize that we are here for a purpose and sometimes it’s to help others because we truly understand what they go through. When I start to wonder why me, it eventually turns into “why NOT me?” it teaches me to be strong. It teaches me to be humble. It shows me who my real friends are, their loyalty to me when I’m at my worse makes me smile. I know who my support system is, and how much my family loves me. As for the scars, they are reminders of where I’ve been, and that I made it through. It teaches me to be a fighter. To continue the fight.