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“Fanm fò, strong woman” that’s what I often get called because I have been living with lupus for eight years now. My best friend loves to remind me that I am a fighter. I appreciate the words of support, I really do. But sometimes I laugh, and sometimes the words frustrate me because I don’t feel strong. This is literally the weakest I’ve ever felt physically, and I can barely hold myself up. I don’t feel like a fighter either, I’ve never learned to fight a day in my life. Sometimes the pain becomes too much to bear. I haven’t felt at home in my own body in more than two years. I haven’t felt normal for so long, I don’t remember what normal feels like. During this time, I’ve been forced to cherish every rare day/hour/minute of happy I can find among this ocean of pain and fatigue. Forget having to take breaks throughout my day, I’ve had to take breaks in my life, and nothing makes me feel weaker and more like a failure. While everyone is out there living, surviving, I’m home not doing much besides suffering. How could I feel strong? What am I doing that makes me such a fighter? I have no idea.

I did try to fight for a while, to fight against being sick. Whenever I stepped out of the house, I did so much pretending. I forced myself to walk a little straighter; I walked with an energy that I did not feel.  I laughed along with my friends when I barely had enough strength to keep my eyes open. I said “I’m ok” when I was dying inside. I put on such a show, I actually got very good at it, at fooling people. But after my latest relapse, I decided to become somewhat of a hermit. Symptoms of my disease made it hard for me to do so many things without help, like walking and buttoning my coat. I did not want to keep pretending. I’d rather stay home and drown in my pain and my depression. I ask myself, how does any of this qualify me as “strong”?

I suppose that I do not like being credited as strong just for surviving lupus. I don’t have a choice.

I suppose that I do not like being credited as strong just for surviving lupus. I don’t have a choice. I haven’t had a choice but to survive since I was diagnosed in 2007. Believe me when I say that if I could somehow run away and escape this sick body, I would do it in a second. I get told I’m strong because I seem to face my disease head on. But the truth is, I lament at least 10 times a day about how much I want to give up. The depression that comes along with my disease makes me weary. I would not be able to make it through even one day alone, without the support and encouragement of my loved ones.

Luckily for me, while my body got sick, my mind stayed clear and healthy. I’ve had bouts of depression that were side effects of my disease, and the result of being bored during my long convalescence. But my biggest advantage has been having such a healthy energetic mind trapped inside a sick and lethargic body. My strength, if any, has been my hope. I have a lot of plans as a young woman, and as a Haitian woman. I admit that on days when I feel better, the intensity of my ability to hope fascinates me. After all the days of misery, the sheer happiness I feel to be alive is euphoric and almost unreal. But even then, it is my loved ones that keep me going. The happiness they feel for me and my good news fuels my optimism. So, I keep hoping for better days. I pray, I draw strength from the encouragement and love I have around me. If my loved ones insist on believing in my strength, I must have it in me somewhere.

Am I a fanm fò? Well, sometimes I feel strong, other times I don’t. Sometimes I wish I didn’t need to be strong. But here I am, for better or worse, surviving, hopeful, trying to be strong.

For more information on Lupus:

What is lupus? | Lupus Foundation of America

You Make the Difference | Lupus Research Institute