Some people smoke, some people drink, I am a social flirt. 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 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.
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. 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.
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Once I choose to let you in and tell you the truth, you know, and there is no turning back. The hardest thing about all of this is once you know, you know. 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. 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. 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. I was always afraid that once anyone knew about my Lupus, it clouded everything else. 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. I now have decided to be completely honest in everything I do and say. 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.
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. This story means alot to me,.. 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.
Ok I have no problem with that ,thats important so take care of yourself and you will be fine ok.. At that time my heart was dropping with pain and some text messages got messed up and misunderstood But she rather text.. So please dont call me or text me anymore!! I truly loved this women and wanted to show her that i cared ,but she said shs wished i didnt care for her…Omg! 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 ,..
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…. 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. 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.
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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.. Someone please give me something. I was on the Internet looking up how to explain to a guy that likes me what its like to date a sick person. Hi, IM molly and I recently started my own blog… thankyou for talking about the pitfalls of dating and lupus.
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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.
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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…. I just described me perfectly. And I never could quite figure out why….. I am glad u wrote this because this is exactly how I was when I was first diagnosed with lupus. I would have difficulty getting hired, 2nd it was none of there business.
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. Thank you so much for the story. It is really nice to hear that you found someone great for you. 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.
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. You know, your happy ending completely makes sense because you sidestepped the Romantic Illusion.
But my best relationships were with women who were deep close friends that already knew and appreciated everything about me before it became romantic. Like you said, my diseases are part of who I am and some of my strengths grew directly out of them. So that makes me easier to get along with. 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. 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. Its been a long rough road but there is light at the end of the tunnel thanks to my husband.
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. I never let myself get close to anyone romantically for fear that they would leave me.
Loved reading your story and I can so relate to certain parts of it! A lovely story to start my day with. I too am with a very patient, loving, fun and accepting man. I fantasize about my man being my personal chef, butler, house-keeper, and errand boy. For example, one day I may feel bright and energized, then the next day I could be too sick to leave the house.
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Think of it like spontaneity in reverse. My perfect gentleman would be content with binge-watching TV shows or movies from the coziness of my couch. I am seeking a casual relationship. Referring to my attire and appearance. I am most comfortable in sweats and a t-shirt with a semi make-up free face. Showering every day is an indulgent luxury for me.
One of the most important characteristic you must possess is flexibility.
I occasionally may have to cancel plans at the very last minute from the symptoms of my lupus and chronic illnesses. If you promise to not harbor resentments should this occur, it will earn you triple bonus brownie points. In all seriousness, because we have lupus and chronic illnesses does not necessarily quench the desire to participate in the dating scene. Being sick is merely one multifarious element within a dating co-op.
You deserve to love and be love. Plus, you are not alone. Many folks with lifelong diseases are looking for their lifelong partner. So, put your big panties on, pull them up high, but try not to give yourself a wedgie and get out there! You are worth it. This is an article written by Lene Andersen, where she highlights multiple options for dating with a chronic illness. Her article offers sound advice about how to date with the unique challenges we face. Lene lists several chronic illness dating websites. You can read her article at: I personally have not visited the websites listed in her article and do not endorse them for liability reasons.
Dating and Chronic Illness: Read more at http: