The Lupus Dating Game

 

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.

©2019butyoudontlooksick.com
  • Paula

    This is SO true, I was diagnosed when I was 6 years old and now that I’m 19 almost 20 years old, I’m just scare of dating, I’d never had a boyfriend just because I’m really freaking scare

  • Ed

    This story means alot to me,..their was this women I had met on me online ,funny thos I had met her 5 years Pryor returning her dog.needless to say she has been through alot including the loss of her husband ,we strated dating, everything about her was wonderful, thow I can tell other problems she had hidden ,she finally explain to me she had lupus..ok that was something I wanted to learn about so i can fully understand her illness..something not easily done.Anyway I felt comfortable with her as she did me even thow at times it wasn’t easy but i took in stride and tried my best to understand. I truly fell in love with her…we didn’t do alot together which being unemployed at the time wasnt good but she understand. Christmas was hard for her causing her emotions to rise on the adsent of her husband durning the holliday was difficult and i wasnt able to see her which was difficult…The mood swings would start maybe flare ups would saclude her..It did seem she was beginning to lose interest on the 3 month but that could be the disease she was fighting…we got together 2 times a week for 4 months and I enjoyed her company as she said she feels so comfortable with me,the closeness I felt with her were remarkable. .feeling wanted and loved and all I wanted was be with her and showed her how much I cared for her…She is t rully a remarkable women, at least in my eyes I wanted to spend all my life with her regardless of her illness..just wanted to make her happy and let her know how much I loved her…Well needless to say on February 4 2015 something happened and her attitude changed toward me,everything seemed to disappear regarding her feeling towards me,…through a text message I received this message after her 4 hr day at work..” bad news and more bad dont want to talk about it “ok….but I will say this I need to focus more on me ,my infection had goten worse my white blood cell count is real low and caused the infection to make more problems….Ok I have no problem with that ,thats important so take care of yourself and you will be fine ok..the next day no more I love you or honey nothing…seemed so distant from me and I couldn’t understand why…Was I scaring her away? At that time my heart was dropping with pain and some text messages got messed up and misunderstood But she rather text ..anyway I tried to explain about the text was missunderstood that she had taken it the wrong way …her replie was this.”sence I simply told you I had medical issues that needed to take care of because of the infection I needed space,and sence you cant seem to understand this I don’t see this relationship going anywhere furthur, I really cared about you but im ending this now. So please dont call me or text me anymore!!”… the end …talk about a hard hit!… WOW…my heart shattered in a million pieces. ..It’s really ashame people who suffer with this and go on dates find it getting to serious and back away…the thing I don’t understand is I was willing to put up with lupus to any extent no matter what the outcome.it was a part of us and I wanted to deal with it because I loved her…or maybe it was an excuse to break off the relationship because she lost intrest Idk! I truly loved this women and wanted to show her that i cared ,but she said shs wished i didnt care for her…Omg! ..It’s been 2 months and haven’t seen her sence.tAlked on facebook thats it..Now I admired this women for her courage and strength and would comfort her the best I can but she dont want to be petted whitch I can understand…I know she has off days and not feeling well she is strong to hide her pain but yet continues on and does was she has to do ,..my problem is I still want her back and its so hard to deal with…this was worse then my devorse…She’s back dating again about a month ago only to hurt someone else who probably don’t care and end up using her and getting hurt..this is what I dont understand..it really is a learning experience with always a sad hurtful ending.thank you for posting this…Ita possible it is lupus doing this mixed emotions of love . Or maybe it was not and it was her true feelings…hard to tell !! I just wish I knew the real cause. I love this women and will never forget what she taught me in due respect. Thanks for sharing this….Ed

  • Jonny cinco

    I’m beginning dating a girl with lupus now and I’m petrified hence my endless google search online at 4:51 am. This is very hard on both parties this is something I cant define. I just ask why. I dont ever like anyone but I do like her she has a good heart and is a genuine person. It’s very hard to deal with the forgetful ness. And the worrying. I’m 23 and have no children and worry like one I always prepare I’m a preparer. I cant prepare to help her anything can happen and that eats me alive in thought I can never truly help. And the thought is paralyzing. If someone was to be with her it would be me but I just dont know if I can handle it and idk if I can walk away either. She told me before it got anywhere close to serious everything and all her problems..at once so I became very scared because I didnt ask what lupus was I just researched on my own so I dont harm her. And with her other issues I’m petrified I want children. Someone please give me something

  • Megan Sorters

    Wow..I was on the Internet looking up how to explain to a guy that likes me what its like to date a sick person. I haven’t been diagnosed with lupus yet, but my doctors suspect I have it along with what I already have, which is myasthenia gravis. The only difference with what your saying and how I feel is that I can’t even keep up that facade of being “the pretty brunette” since it effects my talking, eating, smiling… How do you begin a relationship withoit talking?? I just don’t know how to cope.

  • molly

    Hi, IM molly and I recently started my own blog… thankyou for talking about the pitfalls of dating and lupus.
    It can be amusing, it can be sad but it is never dull. I just wish I didnt have to stop and explain what lupus is all the time… people including family , actually mostly family can be insensitive and sometimes thats hard to handle but after 22 yrs I still havent found anyone to stick with me be it in a loving partnership or with my family.
    They say it takes a village to raise a child well I wish they would understand that living with lupus is like living with and impetulant child…. sighs , thanks again molly

  • Christina

    I just described me perfectly. i dont want to be that way but i cant help it. its scarey to let people in and feeling like you may let them down because you might get sick or die. i play the strong independant women but in reality its a wall that i built around me. thanks for saying all the things i was feeling. even us sick people need love and companionship.

  • Ginger

    Yeah… that’s me. Except I’d rather NOT date and drag some one down with me… have some one upset when I have to cancel because I don’t feel good… to see how I live and call me lazy… etc etc etc.

    Boyfriends are rare. But when I do have one and it gets even a tiny bit serious… I’m out. Gone. Lose interest. And I never could quite figure out why….. you nailed it.

  • Jeannetta

    I am glad u wrote this because this is exactly how I was when I was first diagnosed with lupus. Even my mom told me I shouldn’t tell any one especially employers. I would have difficulty getting hired, 2nd it was none of there business. I too didn’t want to be known as the sick girl, I wanted to be just like I was before the diagnoses. But truthfully I had changed internally, & eventually with time I had to tell cause things were getting worse due to the stress from keeping my lupus a secret. I truly appreciate what u have written cause it really hit home for me and I’m sur many others.

  • CheshireCat

    Wow! Thank you very much for posting this. It sounds familiar to me also – and when I do tell someone about my illness, I frequently regret it or feel really awkward around that person. The article makes PERFECT sense to me. Thank you so much for the story. It is really nice to hear that you found someone great for you. Thanks again!

  • Ashley Morgan

    Wonderfully written, Christine! So many of us have “been there, done that.” Thank you again for using your gift of writing to say what so many can’t. You’re amazing =)

  • Great post! You did a wonderful job of describing so many of the fears and concerns of dating with CIs. I linked to it on my blog, too. Thank you so much for writing this in such a real way. You did an amazing job of putting to words so many of my own thoughts and feelings.

  • I’m trying a relationship. (Ten months so far – hoping Mr Wonderful turns out to be Mr Right.) Part of the reason (one of many) my marriage ended was that my ex-husband was constantly complaining about how lazy I was – now we know I was sick.

    In those initial few years after diagnosis – there was no time to think of myself as a person, but only as patient, as mother, and as someone desperately trying to be able to keep working.

    The best part of this story for me is that you’re now very happily married. It means there’s hope for women like me who are just starting out to try to establish a relationship despite our illness.

  • CCT

    I know what you mean feeling like you’re not good enough because you are sick. You really don’t understand how someone can care.

  • You know, your happy ending completely makes sense because you sidestepped the Romantic Illusion. You’ve got a thousand times better basis for a relationship than all the flirting and dancing and showing off – what you were hiding was lupus. What your dates were shuffling offstage were other problems and you weren’t the only one with some ugly surprises on the morning after.

    You might not have gotten that far with all of them but I can tell you, some of the guys had things they weren’t showing either and habits that would’ve driven you up the wall.

    I’ve had a hard time with love all my life. But my best relationships were with women who were deep close friends that already knew and appreciated everything about me before it became romantic. Heck. Your average girl in a club would not be able to tell that I’m a hard man, tough, able to stand up to extreme torture just by my leaning on the bar spouting off like a literary lion. She’d think I was more of an inconsiderate sod for not walking her out to the parking lot afterwards.

    But if she knew what it cost me to stand up, let alone get out and dance the one dance that went so spectacular – then I get that “You’re so brave” look and I do appreciate it. That’s not pity, it’s anything but. Like you said, my diseases are part of who I am and some of my strengths grew directly out of them.

    When it comes to pain I’m practically Clint Eastwood. It’s not a bad thing. When it comes to managing to behave decently when I’m in a lot of pain, I’ve gotten a whole lot better at it. So that makes me easier to get along with. I’ve got good points that could matter a lot to the right someone. I’ve just got logistics that make it unlikely I’ll meet her till I move… unless I meet her online.

    Last time that worked out well, so if I start flirting with another online sweetheart, I think I’ll just enjoy it and see where it goes.

  • Stephanie E

    OMG ,That was so my story as well .I was exactly like that for so many years until one night 2 Years ago I fell in love and became myself .I found my Prince my husband my soulmate who does take me in sickness and health (literally) I still hide some sick days because I feel like I complain too much but he can always tell and see through it. Its hard being ill no matter how hard people try to understand they just can’t .My husband finds it so hard to sit by unable to fix this illness when I go through a flare up .He feels so helpless .Its hard to watch someone you love be so ill at times knowing theres nothing you can do but love us and be there when needed.
    I have a disease called BEHCETS that I’ve lived with for many years with no name until finally at 33 I was d/x.Its been a long rough road but there is light at the end of the tunnel thanks to my husband .

  • Melinda

    Thank you for writing this essay. Sometimes when I read your articles I find I learn more about myself. I am 26 and look back at all the little lies, or hiding my illness that I did on those first few dates. It is true, when we meet someone new, we seem to have that “huge pink elephant” in the room that needs to be introduced… but how?

  • April

    Fantastic piece. I never let myself get close to anyone romantically for fear that they would leave me. Then I met a guy who became a good friend, who I told all about my illness, and as we got closer I told him he could leave and it’d be okay and I’d understand, that I didn’t want to be a burden. I’d seen my dad care for my now late-stepmother for years (also lupus) and I saw the physical and emotional toll it took on him, and I didn’t want to do that to anyone. But this guy said he didn’t care, and somehow I sensed he wouldn’t leave, and now, almost 6 years later, we are planning our wedding. It’s amazing what happens when you learn to trust and let yourself be loved. Loved reading your story and I can so relate to certain parts of it! Thank you!

  • Snailrind

    A lovely story to start my day with. I’m all moist around the eyes now. Having CFS/fibro, I fully identify with the desire to escape into the perception that I’m a Normal Person.

    I’m glad things worked out for you. I too am with a very patient, loving, fun and accepting man. I still pretend to be normal when I meet new people, though…

  • Great story. I get the Lupus Dating only too well. I had and am still at times teased about the same thing. It is easier to break it off then to allow them to get close to you and let them “in”. However, I don’t do that now, I tell them up front almost trying to scare them away. I know.. sick huh?

    Anyway.. great story as always.

  • Melinda

    So very well put..I don’t have Lupus,but I have Chronic pain due to failed back surgery…fibromyalgia,CFS,severe neuropathies in my legs and feet. I also have generalyzed pain from arthritis and who knows what else..when you wrote that no one knows how ugly my body feels..it just hit home hard. That’s exactly how I feel..that my body is just ugly from all the pain I suffer with. I was divorced after 35 years of marriage to the only man I ever loved,since I was 14..I can’t see anyone ever wanting me now..

  • Kristi

    WOW!! You did it again! Described me and my life as I live it. I was married for 12 yrs and he resented me for being so sick. I have Menieres Disease, Fibromyalgia, and Psuedoseisures. I fear men will find out I am so sick and run. So yes I run them off first. I am in therapy again because I believe I can learn that there is one guy out there that isn’t like my ex and isn’t going to judge me because I am sick. He will find I have a big loving heart and a lot to offer! Thank you for sharing your stories and putting a secure feeling to many auto immune sufferers ! God Bless You!

  • Ivy

    Really GREAT job Christine! This reflects so many of us……but it especially brought to mind someone very special to me who has lupus. Thank you for once again, touching hearts.

  • It’s like looking in a mirror (only with the he’s and she’s reversed!). Well said.

  • WOW, thank you for covering this aspect of living with Lupus. I am in my thirties, and everything has changed for me. For the first two years, my life revolved around finding a correct diagnosis and just being able to get out of bed. So you can imagine what “date life” was like. I was dating at the time of my diagnosis and I don’t believe the man I was dating could handle the package deal. He wanted me to take vitamins and not take the meds. He thought that Lupus was just the name they had given me to cover the real cause of what was occurring with my body.
    I miss being young even know I am(you know what I mean). I miss going out more often and having a chance to meet a very nice, compassionate man. My confidence has changed greatly since all of this. Your story gives me inspiration that there are “good”, strong, compassionate men out there. I really don’t have the energy to hide this illness. On the outside, I look younger than I am, and on a “good day” you wouldn’t guess that I am struggling with a chronic illness(s). I pray to God to meet that right one. My priorities and expectations have changed as far as a mate goes, maybe that was part of the plan. Thanks for this article, from one spoonie to another. This website is such a blessing to me.

  • stephanie

    BRAVO !! the self-reflection u have is a powerful gift, and is inspirational ! much luv AND SPOONS =)

  • I HAVE ENJOYED YOUR STORIES THE LAST 2 DAYS. THEY SURE TELL ME THAT I AM NOT ALONE IN MY CHIARI ILLNESS. I AM SO LUCKY TO HAVE FOUND A FRIEND IN YOU. CAN’T WAIT FOR THE NEXT STORY.

  • Steph

    *stands up and claps* Bravo Christine! Well said with just the right amount of truth, laughs and tears. When you said our meeting was kismet, you hit the nail right on the head. All I would have to do is insert MY name in that article and it would be about me. We are two peas in a….spoon.

    Thank you for sharing and for welcoming me into your world.