Living with a disease like Lupus is a struggle in itself, without adding an education, athletic commitment, job, or extracurricular activities. Lupus can’t be predicted; day to day symptoms appear, change, or even worsen. It’s tough to keep up; constantly battling against yourself to try and stay ahead, to prevent a flare from taking over. Living with Lupus teaches you that your body is precious: you only get one. You have to take care of yourself, or else you’ll be in bed for weeks at a time trying helplessly to recover.

Lupus doesn’t have any real defining features. When you see a person on the street, there would be no way to tell they have Lupus, whether they’re current;y sick or not. Lupus is referred to as a “silent disease” for a reason. Inside, they could feel like they’re barely staying upright, but on the outside, they look perfectly healthy. For most, this can either be a blessing or a curse. On one hand, you are able to push through when you can and act like everything’s okay on the outside, but on the other hand, it’s hard to explain to someone or convince someone how ill you actually are. They’ll look at you and say “But you look great, you look okay.” and to them, that means you’re perfectly healthy. The daily struggle is so tough, but it’s even harder when you add in all the extra stress of managing classes, practices, meetings, or even a job. The stress of possibly not being able to perform the way you’re expected to, or want to, is enough to make someone have a minor breakdown. Here’s a glance into the life of someone living with active Lupus:

At 6:50 AM my first alarm goes off, hopefully waking me up. However, since my body is unnaturally fatigued, I tend to fall into extremely deep sleeps, and have been prone to sleeping through alarms. Let’s just say today is a good day, and I hear that alarm, and turn it off. My next alarm goes off at 7:00 AM and I’m alert enough to know that this is my final alarm and that if I turn it off before I get up, I will more than likely fall back asleep. But, today’s a good day and I get up on time. Now, getting out of the bed is the real struggle. I awoke this morning with a killer headache, and aches all throughout my neck and back. My joints are sore as well, and by the time my feet hit the floor, I’ve discovered that my feet have begun to swell. After forcing myself to get dressed and pack my bag, the next step to surviving the day is taking my pills. I can’t take them when I first wake up because I have to eat, preferably before, but if not, immediately after taking them.

So let’s just say that’s a normal Monday morning, without any other factors.

However, had I gone for a run or worked out over the weekend, I would have felt completely different, and not in a good way. All of my aches and pains would have been intensified and the swelling much more severe. Any kind of alteration to my normal routine results in my symptoms flaring up and causing me more problems. A lack of sleep, an improper eating schedule, and stress can cause most people’s immune systems to weaken, but for someone with Lupus, their immune system is already weakened, and all these stressors cause it to become essentially non-existent.

It’s tough going day to day, and not knowing which version of you is going to wake up. Will it be the healthy one, the ill one, the sore one, or the one that just feels like they’ve been hit by a truck. Sometimes I even wake up in the most awful of moods, essentially hating the world. This person develops from the constant worrying and stressing I put myself through, and is very common among Lupus patients. What’s terrifying is that not only is Lupus just making my life difficult now, but if I don’t take care of myself and listen to what my body is telling me, I could end up in a hospital bed in the future with kidney failure. No one can predict when, or even if, that will most likely happen because there aren’t any signs. For some, they’ll just wake up with a massively swollen knee or hand, and go to the doctor to get it checked out, only to find out that the swelling is a direct result of their kidneys shutting down.

Now, let’s talk about the Spoon Theory. Energy is a big concern for Lupus patients because the disease essentially robs you of your energy. Your body is working twice as hard just to keep up, so as you push yourself beyond your limits, you’re burning through energy. What most people don’t realize is that, unlike the normal person, the bodies of Lupus patients don’t actively make energy to replace what was lost. Our bodies produce energy while we sleep, so what we wake up with is all we have for the day. If your only given 8 spoon-fulls of energy and use 7 for the your morning workout at 8 AM in the morning, you have to go through the rest of the day running on nothing. Your body will not just recover in an hour or two, rather, you'll just be a shell of a human for the remaining 12 or more hours of the day. In order to accomplish a full day of activity, you might have to prioritize, which proves to be quite difficult.

I spent a lot of time pretending Lupus didn’t really affect me; acting like as long as I just took my medication every morning and night, everything would be fine. Recently, I learned that’s not the case. It’s not just as simple as taking a few pills (a lot of pills) every day. I actually have to take the messages my body sends me and listen to them. I can’t push myself too hard; I need to sleep even more than the average person; I have to pay constant attention to how I’m feeling and change my day accordingly. If I begin to get sick a lot, I have to take a step back and allow myself ample time to recuperate and heal. Sometimes, I literally can’t get out of bed and that’s when I know I’m about to hit rock bottom. Being tired is one thing, but being fatigued to the point where you can’t get yourself out of bed, is another. It’s hard to convey what I feel on a daily basis because even I can’t predict it. Lupus has gotten in the way of a lot, but rather than dwelling on what I’ve missed out on, I’ve made the decision to move on and take life a day at a time, which isn’t always the easiest thing to do.

Lupus doesn’t only affect me, but those around me. My mood is affected largely by how I’m feeling, and sometimes that results in me being irritated and miserable towards my friends. I’m lucky enough to have a support system back home, but being away from them for months on end has a massive effect on me.