Lupus *IS* My Superpower

September 9th, 2010 by Jules Leave a reply »

Now, isn’t that such a strange statement. And today I got to use this superpower to do some real good. This story involves other people and normally I wouldn’t share without first talking with the others involved. However, as the bulk of this story played itself out (thanks to the wonderful internets) on Twitter, I think it is safe to share.

There is this guy that I know. I’ll call him @rulesaremyenemy. I know him through PAX but more specifically, through a group of us Twitter PAXers aka The Twitter Shitters. He has this other friend. I’ll call her @alexandrathegr8. I had no idea who alexandrathegr8 was until a couple of hours ago. She had tweeted something, to which rulesaremyenemy replied, “Sorry to hear that :(. I suggest that you talk to @geekyjules.” Being curious as to why I was suggested as a person to talk to, I clicked on the “in reply to” link to find this, “Parents know. I’ve pretty much been in tears for the past hour and a half. I tested positive for lupus, which runs in my family.”

My heart dropped into the pit of my stomach and tears came to my eyes. I replied, “Please do. I have lupus myself and do a lot of work (including write for a Lupus mag) surrounding this.” Alexandrathegr8 sent back the message, “@rulesaremyenemy Thank you so much. I appreciate that so much. @geekyjules, would you mind if I emailed you? :)” I told her, “Please do!”, and gave her my email address.

I am not going to go into the details of the emails as those are private. I think it is safe to share she asked many questions. There are many things which run through your mind when you face a disease that has a thousand faces and a thousand manifestations for each face. Questions, fears, anger, loneliness, sadness, desperation, naturally come into play. To make it even more difficult,  she lost a family member to Lupus. My heart goes out to her. She has a difficult road ahead of her and she will be faced with a huge amount of misunderstanding from those around her. I really wish I lived closer to her so that I could hold her in my arms and allow ourselves to cry together.

I wish I had that when I was going through this, someone to just hold me and cry with me without telling me it is all going to be okay. Because at the very moment this road begins, you do not think or feel that things will ever be okay again. You have to face things you don’t want to in order to give yourself the best tools possible to tackle this demon head-on.

Unfortunately, she lives in the States and I live in Canada. So all that I could do was answer her questions, give her links to some resources she will need, give her e-hugs and insist upon her once more to please ask me any question at any time and I cried for her. I’m still crying for her. Her life totally sucks right now. It won’t always be this way. She is a smart girl and she will get through this. But this really sucks big blue hairy monkey balls and she needs to know it is okay to admit that. You can have fear yet still be brave enough to fight it.

After we exchanged our first in what will be many emails to come, she tweeted, “i thank god for people like @geekyjules.” This touched me. And I cried some more. When I made the decision last year to start talking publicly about my Lupus, I was a lot nervous. I didn’t want to be known for the girl with Lupus. I didn’t want people to see me just for this disease. It was something my Alfred and I discussed when I was preparing for the interview I did with Patrizia Hernandez for “Love Simple.” Yes, I have Lupus. Yes, it can certainly kick my ass in painful and unpredictable ways. But that doesn’t mean I, myself, cannot kick ass and take no prisoners. I am still quite productive despite Lupus. I still get a lot of stuff done, I just have to go about it differently. Both my Alfred and I were afraid that doors would close, rather than open, for me if I got too vocal regarding my Lupus.

Today, I got to use Lupus to help someone else when they needed it the most.  Today, my Lupus did some good. Yet again today, Lupus was my superpower. I think I needed it as well. Today has been a wee bit painful. I have Chandler Claw Hand and I haven’t even been gaming.

And people wonder why I love the internet so much. A few years ago, I don’t think my Lupus would have been a power in this way. And thank you, rulesaremyenemy, for telling alexandrathegr8 to talk to me. It means a lot! <3



  1. Juliana Joie says:

    Dear Julia,


    I am moved to tears by your story. I, too, would like to hug Alexandrathegr8 and not tell her everything will be all right. I’d like to hug you both and cry and shake our heads and mourn some more.

    Although I’m a very positive person, I’m also very honest. Being diagnosed with lupus is life-altering and TOUGH and miserable. It CAN be a super-power, and you’re heroic to claim it, Julia. (Go, Girl!)

    At the same time, things will never be the same again.

    I feel so glad now that I’ve made my site and that I’m reaching out via the web to others with chronic conditions. (It was a friend diagnosed with lupus that got my butt moving on this project, ’cause I had to do something to help.)

    I also don’t want to be known for all my diagnoses, and there are many. But I DO want so much to help, to support, to de-stigmatize, to share.

    Thank you for being a superhero, Julia. And I’m here for you, AlexandratheGr8. (@julianajoie on twitter if you want to connect.)

    • Jules says:

      Thanks, Juliana, for your comments. They are very much appreciated <3

      Have you checked out the Lupus Awareness Art Gallery I'm currently taking submissions for the October update if this is something you'd like to do.

      Once again, thanks. This road is not easy but it becomes more bearable when we share it together 😀