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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.


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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.

The ‘Girlfriend Experience’ is Much Different Because of Lupus

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.


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  7. 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 still pretend to be normal when I meet new people, though…. I get the Lupus Dating only too well. I had and am still at times teased about the same thing. So very well put.. I also have generalyzed pain from arthritis and who knows what else..

    I was divorced after 35 years of marriage to the only man I ever loved,since I was 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. 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! 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.

    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. 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. 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. 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…. In addition to my lupus, I also have fibromyalgia. One of my best friends was recently diagnosed with it as well. Being a single mom comes with its own issues entirely. Unfortunately, this leaves little room for anything else.

    But I am saying there are extremely difficult down times.

    Dating with Lupus as a Single Millennial

    These things take a toll on the mind, body and spirit and it takes a truly patient, loving and forgiving person to face a future like that. The typical Girlfriend Experience is filled with the traditional relationship issues of sex, love and fun. But I also need someone who has the patience to see me through my darkest days. It does not provide medical advice, diagnosis , or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

    Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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    8. And when do you decide to move on? Before we begin, full disclosure time. We, at Kaleidoscope Fighting Lupus, are not therapists. We cannot give you a magic equation to finding Mr. So ready to play the Dating with lupus Game?

      The Lupus Dating Game

      To be honest, or not to be honest…that is the question. For those who suffer with a chronic illness like lupus or a lupus overlap disease, deciding to tell or not tell a person you are pursuing can be quite an agonizing decision.

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      Some people decide to wait until they get to know the person and feel more comfortable sharing that part of their life. Some people, like me, tell the person on the first date. So which is the most beneficial option? Which will set you up for success in the weeks, months or possibly years to come? Have the discussion on the first date. We may have had a bad experience here and there with a date or relationship in regards to lupus, and then expect the worst from people from there on out.

      This is a short description about myself and what this site is about. I hope you enjoy being here!

      I like to believe that honesty and authenticity are attractive traits. I mean, who has time for smoke screens and facades? Anyone worth your time will respect your journey if you respect theirs. If you truly want to get to know the other person, then let them get to know you.