The month of May is Lupus Awareness Month. This is something that is near and dear to my heart because a little over a year ago I was diagnosed with lupus.
Lupus is a chronic autoimmune disease in which something causes the body's immune system to create autoantibodies that attack and destroy healthy tissue. The autoantibodies cause pain, inflammation, and can affect and/or damage organs.
It is really hard to diagnosis lupus. Lupus mimics other chronic aliments so it isn't uncommon for people to be wrongly diagnosed for years (like me!). The most common symptom of lupus is a butterfly facial rash that spreads across the nose and cheeks, but this is not present it every case. Other symptoms of lupus include chronic fatigue, joint stiffness and swelling, fingers turning white or blue when exposed to cold, hair loss, and chest pains among others. It's reported that 90% of those affected by lupus are women. Most cases occur between the ages of 15 and 44 (source).
Lupus is a disease of flares. Flares are periods of time when symptoms become much worse and gradually begin to subside. Joints may balloon up for a week or weeks or fatigue may be worse before beginning to lessen. There is medication to control pain caused by lupus and to reduce the severity of flares, but THERE IS NO CURE FOR LUPUS.
I can tell you from my own experience lupus is a cruel disease and frankly it sucks. There's no other way to put it.
Aside from the symptoms I think the worst part about lupus is people can be really, really mean about it. I can't even begin to count the number of people who have told me I am faking my symptoms for attention, which they then proceeded to call me pathetic and a drama queen. How do you make people understand that just because you don't look sick doesn't mean you aren't suffering?
Do you know what it's like to wake up every day utterly exhausted? I could get 2 hours or 10 hours of sleep but it wouldn't matter. Even the most basic tasks of brushing my teeth or showering are completely draining. Despite how tired I might be a lot of times I can't sleep. A lack of sleep often intensifies symptoms, creating a vicious cycle.
Then there's the attractive rash. Yes I have the butterfly facial rash, but I also have a lacy patterned rash on my arms and legs. I have had so many people treat me like I have ebola or I'm a freak show because of how it looks. It got to point where I refused to wear short sleeves out of the house. I hid my arms in shame. You may think that's cowardly but when everyone gives you strange looks and asks what's wrong with your skin it destroys your self-confidence. I even had a boss look me straight in the eye and ask me, and I quote "What's wrong with your face?" I drove home crying that day. It's words like that stick with a person forever.
Then there's the people who want to know if lupus is contagious. Sometimes I want to punch these people in the face (ok most of the time I want to punch these people). No joke I have had people take a GIANT step back from me and ask if it is contagious. It's moments like those that make me wish it was contagious only so people could understand what I go through. But no lupus is not contagious and I can't "give" someone lupus.
Lupus has truly affected every aspect of my life. I can't be out late with friends because I pay for it for a week. I have always been a really healthy eater, but my diet has become much more restrictive as my body no longer tolerates certain foods (namely gluten and raw seeds and some nuts). I have had to stop running because running causes really bad pains and causes my joints to swell (which just makes me really sad because I was halfway through training for a half marathon). I no longer have enough fingers to count all the doctors I see, not to mention the box on medical forms to list all of your current medication is about ten lines too short.
Lupus has negatively impacted my life in many ways, but so much good has come out of it as well. I refuse to let the negative outweigh the positive on this journey because I have learned a lot about myself along the way. I've learned that I am not in control, nor can I control what happens. God is the only one who knows what the future holds. I hold fast to the fact that his ways are perfect and that everything happens in his perfect timing. God has become my rock and honestly I don't think I'd be as happy or accepting of my lupus if I didn't trust in him.
I've also learned that I am a lot stronger than I ever thought possible. I've learned that I really don't care what people think of me. My worth is not found in others approval, it's found in God. I've learned that having a support system is vital, especially on bad flare days. I've learned that there is life outside of lupus. And most importantly I have learned that lupus does not define me. Lupus is a part of me, but it's only a small part of who I am.
Lupus cannot and will not change my dreams. It can't change the passion I have for life. It can't change the love I have for my family and friends (and my nutty dog). It can't change the wonder I feel when I stand beneath a blanket of stars. It can't change the love I have for helping people. It can't change my love of adventure. Lupus has changed my body, but it can't change who I am.
The point of this is not to make you feel sorry for me. Frankly I don't want and certainly don't need your pity. Rather, I wanted to give you a window into my life and what it is really like to live with lupus. There is no cure for lupus and sadly lupus is largely ignored in medical research because so much funding is poured into research for other diseases. Lupus is as real of a disease as cancer and there needs to be funding for research to learn more about the disease and hopefully develop a treatment for it. One of my dreams is to be able to address congress and fight for funding to lupus research.
Nothing can happen without people speaking up though. I know I will continue to be an advocate for lupus research for the rest of my life. But one voice alone cannot make a difference. Education and awareness are critical first steps.