I have lupus but lupus doesn’t have me


May… May is the month of mothers. The month of love, peace, and also the month of change, according to some. May…is also the month of Lupus. Lupus Awareness Month is observed during May to increase public understanding of this cruel and mysterious disease that ravages different parts of the body. Before we go into the topic, I want to present myself. My name is Ann-Sophie and I have been diagnosed with Lupus since the summer of 2011. I knew about Lupus because in 2007, my cousin had been diagnosed. I asked questions when I realized that she had changed. She no longer laughed, she was no longer nice, she just seemed irritable. My mom explained that we shouldn’t be too hard on her because she was dealing with Lupus and that was probably the reason why she was so angry. At the time, I didn’t pay too much attention to it. You know, it is one of those things you think only happens to others so you just watch from a distance, feel compassion once in a while but you don’t fully understand until one day, it knocks on your door. Just like death, you can’t quite wrap your mind around it until it is really close to you. While I don’t wish lupus on anybody, I will take you on a journey through the inside of « me » so you can have a tiny idea of how it makes people feel. Welcome to my world.

In 2011, I went through a phase of depression, deep sadness and stress that nobody knew about, which, in my opinion (and doctors) contributed to waking up the disease that had been present but inactive in my blood. While I was living away from home, renting a room in this 60 year old lady’s home, my disease woke up. It started with pain in my fingers, knees, ankles, elbows and wrist. At first, I didn’t pay attention to it because I was far from imagining that it meant something. Once in while I had pain here and there. But it started happening more and more often as time went by. I thought that it was due to the cold since it was the first time that I was experiencing winter. I talked about it to my parents who asked me to keep an eye on it, telling me that it was probably due to the cold, that I had probably hit my knee somewhere without realizing it, which made a lot of sense. I only started to get worried when my fingers got so big that I couldn’t move them or put on my winter gloves or the time when I had to limp to school because of severe pain in my ankle. I knew that something was wrong with me. I knew that my body was not functioning normally but I couldn’t put my finger on what was wrong. I mean, how do you explain to people that you can’t move your fingers, or that you have pain in random places without finding a proper explanation for all of it?

I took some time to start writing this because I hate to cry when I talk about it. As a matter of fact, I started crying right about now, but please bear with me, it is almost over.

At the time when my disease started revealing itself to me, I was jut confused. On top of dealing with my depression, which can cause physical pain and make you stay in bed, I had extra pain from my joints and extreme fatigue, which are symptoms of lupus. That’s when I started feeling like my life didn’t really make sense anymore. That’s when I started thinking about disappearing and forgetting about stupid fingers that couldn’t function properly. I started to drink more to forget my pain, smoked weed to try to find some relief. And I felt like a shadow among people who knew nothing about what I was living. I couldn’t really talk about it. Even if I tried sometimes, I couldn’t really say how I felt. I had no words to explain that I felt horrible in my skin, that I felt like my body was committing self-destruction and that I was fighting to get out of bed every morning. I couldn’t say that I cried alone all the time, that I had to be my own hero and find the courage on the inside of me to keep going, to keep my grades up, to keep smiling, to keep being the strong young lady that everyone thought I was. I knew I could talk to some people, but I just could not. Instead, I always gave pieces of information, saying I didn’t feel well today without going into details.

In the summer, I finally underwent medical examinations at home, in Haiti, so we could see what was the cause of my physical pain. Since I was exposed to a lot of sun at home, red rashes started appearing on my legs (another lupus symptom). One time at this party, I couldn’t go down the stairs without help so while I was crying I called my dad who picked me up and gave me a shot to ease the pain. That night, my mom stayed in her room. While I was crying in the other room, she stayed in her room and cried silently. That night I really wanted to die because I felt horrible for making my parents feel like this. My sister cried that day but couldn’t do anything. I know you might think « But dying would be worse for them » But you are not logical when your life no longer makes sense, you just want to disappear. While many other beautiful things were happening like the fact that I had just met this awesome guy (my boyfriend), I didn’t want him to have to see me like this. I still didn’t know what my disease was, because at home, the equipment were not advanced enough to detect it but the doctor « reassured » us saying that once I would be back in Canada after my summer break, they would clarify the mystery. « It might be lupus » She said. But what exactly is Lupus?

Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body. It generally attacks women and there is no cure at the moment. There are existing medications that are used today to calm down the disease, which makes it a lot easier for lupies (people with lupus) but research is still being conducted to find a more effective and long term cure.

About  a month after this, we learned that her guess was right. From the end of summer 2011 to summer 2012, it got worse and worse. I became angry at the world. I was in pain most of the time and we even had a scare when the doctor said that the blood in my urine could be due to a kidney infection (again, because of the lupus). Luckily, at my worst, in summer 2012, I had a strong support system. I had a caring lover who actually paid attention when I talked about the pain in my joints, my friends stayed and cried with me when I thought I would need a biopsy for my kidney. My parents were here for me, comforting when I needed it. Long story short, I didn’t need the surgery, I went back home for summer and slowly but surely started feeling better. When I got back to Canada, the doctor was surprised. He said: « You should go home more often Ann-Sophie! »

There is no cure for Lupus, but you know what I noticed? Love cures. When you are in an environment where you are surrounded by people who are present for you, who treasure you, your spirit heals. I’ve learned many things from Lupus. Like the fact that life is a treasure, that having functioning fingers is a blessing. The sensationg when my fingers released after two days of being rigid! We don’t always take  the time to cherish our temple, when this is where our spirit resides. We don’t realize that what we cary on the inside, is expressed on the outside. I kept getting better. In 2013, when I had my encounter with God, I understood that God heals because He is Love. I understood that, if I truly loved God, I should focus on taking care of myself, which meant, control when it comes to alcohol, getting my beauty sleep, exercising, listening to my body, eliminating toxic environments and toxic emotions and BE the creature that I am supposed to be. Even if you don’t believe in God, you might sometimes feel the need to hold on to something if you or a family member is suffering from these kind of diseases. Well, my advice is to hold on to the fact that life is perfect in all of its imperfections! You need to know that it is OK not to be OK and that sometimes you will want to say FUCK IT! Indeed…Fuck lupus, fuck cancer, fuck sclerosis, fuck illness in general. Whew! Doesn’t that feel good to let it out? Know that you are not alone, know that in this life, if you open your heart enough, you will always find what you need to hold on, to keep moving.

I am happy to tell you that, today, I am better! Waaaaaay better. The only moments I feel the pain are when I am too tired, which helps me listen to my body more. I still believe in miracles. I talk more, I liberate myself more. I believe that there is the place for miracles inside everyone if we reconnect with the divine in us. Since I opened my heart to this truth, I no longer suffered from paralysis in my fingers. The pain that comes, goes away after I take some time to breathe and talk to my disease. Yes.. it happens. There is power in the words you speak. The power of life and death resides in the tongue (Proverbs 18:21) and I experience my own miracle when I talk to my disease and watch my fingers slowly but surely loosen up! Trust me, the human body does listen. My doctor was very skeptic when I told him that I would get (actually I already am) get a divine healing…not sure what he believes in but hey, gotta share I know.

If you suffer from Lupus, know that you have a power on the inside of you, the power to listen to your body and hear what it asks you to do to make it feel better. Lupus sucks but your life doesn’t have to suck because of it. You don’t suck because you have it in your blood. For those who have lost a friend, a sister, a brother, a mother, a wife, a husband, a father because of complications from lupus, I want to give you a virtual hug. I don’t know why some cases can stay under control while some go out of control. We can’t explain everything in life but what I know for sure is that, you are stronger than you think you are.

May is Lupus awareness month. I wear purple because I HAVE LUPUS BUT LUPUS DOESN’T HAVE ME! Storms will come, but after each one I will focus on my rainbow.

If you want to learn more about lupus, click on the link below and support the ALR (Alliance for Lupus Research) to help find a cure!

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I am a girl who is passionate about seeing the world, loving people, the beach, rooftops and red lipsticks. I am trying to make the world a little brighter one article at a time.


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