My family once joked with me that I only kept guys around for a 6 month to a year and a half rotation. My mother even joined in the fun and told me not to bring someone home, unless I was “serious”, because I sure had a lot of people who were “friends”. They claimed I had an emotional spring-cleaning of sorts, every few months. I laughed and scoffed saying it wasn’t true and they were just teasing me. But one day after another break up amidst the tears and confusion I realized they were right. It made me sad every time they would joke, but I would never tell.  It bothered me and I tried to think back to every man that I ever dated or even spent time with, and I didn’t want to continue this apparent pattern. I finally figured it out, and lovingly, or jokingly (depending on who I am talking to) refer to it as “The Lupus Dating Game”. To understand the game, you need to first know the rules.

 1) It is easier to hurt others then to get hurt. Now this is a rule that pertains to most people, not just those who are dealing with an illness, but I think that because people who have been sick have dealt with so much sadness and disappointment in their lives, the mere thought of being hurt or sad scares them into running away from relationships and love. Why even take the chance of being hurt? Just when things get good, I would rather mess it up myself and leave. I feel like Lupus has taken most good things in my life away, so it is almost like I don’t even want to give it the chance of ruining a relationship. Most of the time, I was always the one to break up with a guy. I would find something wrong with them, I would get bored, or if I didn’t have the guts, I would give them plenty of excuses to break up with me.

 Another way of accomplishing the same goal is by getting myself into impossible or hopeless situations from the beginning, that way the relationship had no way of working. I would rather be remembered with the romantic notion of “the one who got away”, than as that sick girl they once dated. I decided to be someone they remember fondly, though it “just didn’t work out”, then have them choose not to be with me because I am sick. We would both be forced to blame the situation, and not my illness. I guess that was my way of hiding it, or protecting myself. I would even date people long distance, knowing full well I was the kind of person who needed attention, and physical contact. I would start to like someone just before they left for a big trip, or when they were moving half way across the country, because I knew they would have to go and it would be easier to say goodbye and keep in touch, then to break up. I even would start to date people at work, because I always had the excuse of the job to end it. If you start something that is doomed from the beginning, then you can’t be blamed when it doesn’t work out.

 2) Meet someone as social or busy as you are. If you are one of many to them, then it is ok that they are one of many to you. It is an illusion, or a game to hide the ups and downs in your own schedule. I wouldn’t date the shy guys, or the anti social guys. I didn’t flirt with the boy in the chorus; I would flirt with the lead of the play or the director. I didn’t date a guy in just any fraternity, I dated the president of all fraternities, and heck I even dated the homecoming king. I didn’t talk to just any guy in the bar or club, I wanted to be the girl with the DJ. He was the one everyone in the whole place was listening to. He had the power to control the whole party; if you are both busy then you can’t be singled out for not being around. I always have a lot to juggle with family, friends, work and now an illness. If the person I meet is just as busy, the hope is he won’t notice when I am tired or not giving him the attention he and the relationship deserves.

 3) I was petrified to get married. Okay, so I know this might be shocking for those of you reading this who know me as I am now very happily married with a child. I was the girl who dreamed of my wedding the minute I read any nursery rhyme about a princess meeting her prince charming. I would buy silly tiaras and hang a sheet off my head pretending it was a veil. I even danced around the room and sang Here Comes the Bride. Every aspect of my dream wedding was planned out from the flowers, to the church, to the names of the forthcoming children. It was a beautiful watercolor dream, and when I got sick, everything changed, and I started to live in fear. I stopped dreaming. Why even begin to dream when my dreams would always be just a bit out of reach? Why be disappointed again? Why believe in the “dream wedding” when reality has no place in dreams. 

I was so afraid to even begin to like someone seriously, that whenever the relationship reached the year mark, or when things got more serious, I would end it.  If I had to I would even cheat, and give them a reason to leave me. As I got older this became even more important, and friends and family expected me to eventually get engaged after a certain point. It is easier to end something then to take the next step. How could I possibly attempt a commitment like marriage, when half of America is divorced and many of them don’t even have to deal with an illness on top of regular normal marriage issues? Everything I have ever loved including dancing, college, even some friends, has ended because of being sick. I was scared to start a marriage I couldn’t promise I won’t fail. I like guarantees and in my life I have had none. I have failed at so much; still I wanted more then anything to have the fairytale. I wanted happily ever after. So this is why if someone special made it past the first few minutes, or months, or if he even made it past finding out the truth about my illness, then I defiantly had to end the relationship before it got serious enough for me to fall in love or worse yet have the potential to marry him. 

4) You can be whoever you want to be to a stranger. This might be the most important part of “The Lupus Dating Game”. I can be the pretty brunette you meet at a bar, through a friend, or at work. When you don’t know my present, or my past, I can carefully choose what to tell you. I am the author and I get to write the story all over again and purposely leave out all the bad parts. Some people smoke, some people drink, I am a social flirt. I can’t lie; I am good at it, maybe even exceptional. I can walk into a room, and if I want to, I will know your name in 5 minutes and you won’t forget mine. In the business world, they said I was dynamic, and personable. In theatre or in creative circles people described me as the girl with sparkle and stage presence. Among friends, I was the funny, loud girl with the big personality. Everyone has their forte, and I guess mine was and still is meeting new people and having them remember me. It becomes an addiction, even a high. The stranger can help me forget everything I want to run away from, I can escape. I can be sexy, I can be funny, I can be whatever they want me to be, or whoever I feel like being but the last thing I am going to be is sick. In the few minutes, or days or even months I get to know someone, they can give me something that no one who already knows me can give me. I can be “normal”. I can be anything I want to be and they can give me a fresh clean slate.  

Once people know you are sick, no matter how healthy you are at the time, they always look at you different. You now officially have baggage. If they care about you, they worry about you. (Yet, if they didn’t care about me or ask how I was, I would probably be upset and feel neglected). People never ask the most average question “how are you?” the same again. The truth is they really don’t want to know the answer. They stare at you with their head tilted to one side; eyes squinted with a tint of care or concern and a look in their eyes that cuts deep into the soul of the receiver. It is the face of pure sympathy, and it’s not a pretty sight. Most people do not even know they do it, but they do it all the time. I hate answering the questions. I hate being the one people worry about. Once I choose to let you in and tell you the truth, you know, and there is no turning back. You can’t erase it or take it away. The hardest thing about all of this is once you know, you know. 

So when I meet someone new, male or female and I am “just like them”, it is as intoxicating as the most addictive drug. It is worse when it is a man, because then not only am I normal in their eyes, but I am actually wanted or desired, and not the damaged goods I see myself as. I can be pretty or dare I even say beautiful. They don’t see the pills I just took, or the bruises I am hiding. I can smile and they don’t see the pain I am in, so they help me forget. It is in that forgetting or escaping that is the greatest gift some of these people I have met have given me, and they never knew it. They don’t see how ugly my body feels, because “I don’t look sick”. The problem is, there are times when I actually start to like the person, and I choose to tell them more about myself. Sooner or later my illness will come up, and as quickly as the heated rush of desire came over me, it vanishes, as if the magic spell is gone. Now they know, and they know too much. It loses its romance, and they lose me, since that was the attraction. Now, since they know, I can’t use them to escape.

So the “Game” isn’t as much about men or breaking up, as it is about my desire to be wanted, to be normal. I was always afraid that once anyone knew about my Lupus, it clouded everything else. You can’t run away from something once the glaring truth is out there. I tried to hide my illness like a big secret, at all costs, even if it meant losing some great possible friends or loves. I wanted to be loved just for being me, not despite my illness. Finally, I learned that my illness has become a part of who I am, and leaving it out leaves out a big part of my life. The amazing part of MY story is that it is mine. I am stronger and more mature because of my illness. I have more to give and share because of everything I have been through. I used to think you had to be perfect to be loved, but now I see that the imperfections are sometimes the most interesting, exciting, and even loveable things about a person. Anyone who meets me never truly gets to the core of who I am or can appreciate how far I have come, without knowing everything about me.  

So I guess having strangers half – know me lost its intoxication when I realized how fake it was, and that they were attracted to a girl that didn’t exist. I now have decided to be completely honest in everything I do and say. Sometimes I fall back, and want to “run away” with the next person I meet and tell them some fantastical story that certainly doesn’t involve illness. That would be easy and very stupid. I have learned that the reality is so much better then the fantasy, because fantasy can only take you so far. It is like a DJ at a club, at some point the music has to stop, the party ends and you have to go home. When all the hype is gone you are left with yourself. Now, if I meet anyone new they need to like me, all of me, whatever that means.  

Essay written by Christine Miserandino, butyoudontlooksick.com

*I was compelled to write this essay after watching the movie “Love Simple”. The mian character has lupus and you watch her ups, downs, lies and honesty on the road to love.  I will be writing a review shortly for the movie but you can check it out here.