Dating with Lupus as a Single Millennial

Kristiana Page avatar

by Kristiana Page |

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Dating is difficult enough as a millennial. I’ve always hated the concept of dating, but now despise it even more. Meeting even someone who I think the world of leads to the Herculean task of trying to find the right time to break the news that, no matter how healthy my body appears, it lives with a chronic illness — and always will.

Welcome to the technological age where texting is the main form of communication, and no one wants to be committed to another person in any way, shape or form. The general outsider view of my generation is that we aren’t willing to work hard in a relationship — as soon as we face adversity, that’s it, throw it out, time for a new one! And unfortunately, to a large degree, they’re right.

I’ve found that being single is not all that society makes it out to be. It’s not carefree, fun and a complete lack of responsibility to anyone but myself; it’s rules and mind games, endless and meaningless introductions and small talk.

Even stumbling across someone worthwhile will mean working out the perfect time to bring up the one thing that can’t be run away from — knowing that it’s entirely likely to ruin everything that I’ve put into a potential relationship — my good ol’ companion, Lupus.

When is the perfect time to mention to someone that at 20 I’m not nearly as healthy as the average person? Should it be mentioned when we first meet, and hope that doesn’t scare them off on principle? Or do I wait and hope that, when we are further down the track, they don’t feel like I’ve lied and intentionally kept it from them?

There is no correct or easy answer, and while most people take it pretty well, I can tell even sharing with them the metaphorical blurb of my health issue freaks them out. I don’t blame them; it’s a hell of a lot take onboard.

The truth is that I’m not upset or mad if someone’s unable to handle my news; I understand and respect it and at the end of the day, it’s my burden to bear not theirs. I’m at peace with the hand that’s been dealt to me, and accept that there are few things in life that’ll ever be truly classified as “easy.” Ideally, I’d meet someone who would see past my lupus and all the trouble it causes me — but it’s definitely not that simple.

Dating and committing

I live by the idea that you should never commit to a relationship with someone who you don’t see yourself spending the rest of your life with and, by that premise, know what I’m asking for in the long term. It’s no small feat.

I’m asking you to knowingly commit to me, despite me having ongoing health issues and technically being somewhat of a ticking time bomb. There is no cure for lupus and at some point — whether near or far — my health will most likely start to deteriorate because of it. There is very little I can do about that.

It’s not quite the same for me as for those diagnosed at middle-age. Chances are, they already have a partner who has loved them for some time, who has seem them at their very best, and has made the commitment to stand by them for better or for worse.

It’s selfish, but I’m asking someone to knowingly take me as I am, and that’s starting off in the “for worse” category right off the bat.

When dating, what I’m asking for is unconditional, since no matter how much I fight it, in reality, lupus is a battle I’ve only just started and — in the next however many years of my life — I’ll never be given a lull.

I’m asking you to take my hand and walk with me through a dark forest, knowing there’s a wolf in there destined to come for me at every turn — and honestly, I know that’s not fair.

 

Note: Lupus News Today is strictly a news and information website about the disease. 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. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.

Comments

Zoe avatar

Zoe

Great article. Personally, I have had some ups and downs when it comes to online dating, not stating that all my connections have ended horribly or that I have had experiences that would deter me. That is not the case; unfortunately in life everything has its perks and downfalls and you just have to roll with the punches. For instance, I was on the phone at baltimore.partyline.com with who I thought was this amazing man, he was smart, funny, sweet, adventurous – the whole nine yards, but it turns out that he lied about his age and was way too young for me, so instead of disregarding him, we ended up becoming friends. I just turned this downfall into a perk because I was open for any scenario, sometimes the unexpected happens and it’s what you do with it that makes it worthwhile.

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Kristiana Page avatar

Kristiana Page

Thank-you Zoe, I really appreciate it! :)
I guess regardless of whether you're a "Lupie" or not, we all go through ups and downs when it comes to dating, but I love your outlook and how you've always managed to find a silver lining!! x

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Kate avatar

Kate

I was diagnosed with Lupus at 19 in my first year at University. I found it really hard to cope with student life, let alone dating.
I was lucky, however that I found my husband in my final year at Uni when I had just been diagnosed with Lupus Nephritis and was going through chemo. He came along to one of my "pulses" with me and I guess I knew at that moment he was a keeper. We've been married 11 years and right now he is supporting me through having a brain tumour as well.

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Kristiana Page avatar

Kristiana Page

I know how you feel, I'm went through my very first year of uni this year and it's been harder than I've ever imagined. I don't have the energy to study as many subjects as everyone else and I know even if I did the stress wouldn't be good for me :(
Wow, I'm so sorry to hear about your on-going health issues but am glad to hear you found someone who will stick by through thick and thin, your story gives me a lot of hope for the future.
I wish you all the best with your health, sending much love and well wishes from Australia! x

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Niamh avatar

Niamh

"I’m asking you to take my hand and walk with me through a dark forest, knowing there’s a wolf in there destined to come for me at every turn — and honestly, I know that’s not fair."

This is so beautifully written, this line in particular has stuck with me. All the best Kristiana.

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Kristiana Page avatar

Kristiana Page

I'll admit as I sat with my laptop and wrote that line, it hit so close to home that I cried.
Thank-you so much Niamh, I really appreciate it!! x

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Martha avatar

Martha

Datting and commiting with lupus is quite a difficult task.
I was first diagnosed with lupus whem I was 14 years-old. By that time everything seemed possible unless expose myself to the sun, as at that age we think we can change the world and make everything possible, but in a few months I realized the 'monster' I was dealing with.
During that summer I was not alowed to get to the beach dispite having a house just a 2 minutes walk distance.I was kepted at home during the days and olny get out at night. But as I wasn't with my friends during the day they soon put me aside and stop invited me to dinner or getting out with them. fortunnately by that time I had a boyfriend who, althouhg didn't understood my illness, helped me a lot just by being there for me.As the relationship ended I was left completed alone. My firneds didn't undertand my lupus as I looked very heatly and caused the impression of being lazy as I was always sleeping.
I did managed to have more two relationships but at the age of 20, whem people start to think of getting married I was soon put aside again as it might be difficult for me to have childrens. No one told me that but I know for sure that that was the reasons why I was left.
There were difficults times by then. I got depressed and got a Lupus flare.
I seem to lean on old familiar ways looking for a long term commitments rather than small feat relationships. Besides, breaking it up get me depressed, stressed and boost my Lupus and I get worse.
During all my teens I had to managed relationships the best I could trying to avoiding conditions that might lead me to a Lupus flare.
After the age of 20 I couldn' get any relationship anymore as people looked at me as someone who's ill and although they don't understand Lupus they just know that it is bad.
I have never found anyone who was realy interested in understanding Lupus. People are just too busy with themselves, so I am still single.
Being diagnose so young didn't alowed me to had someone who understand Lupus by my side. I guess chances are few whem you are so young.
When dating you first try to forget that you have lupus but as far as a long term relationship is concerned you can not just pretend that you have no Lupus and have to deal with your partner and face difficulties. As I have never found anyone who was realy interested in knowing Lupus I am Single! I guess i have married to my Lupus and it is quite a difficult relation to deal with.
Nowadays people don't want to be commited to another person.
I don't blame anyone for that, I just try to understant their point of view and in fact it seems difficult to get commit to a non healthy person. These days whem couples face adversaty they don't fight fot their relationship and just get divorced. So it's even worse to find a person who is willing to get in a long term commitment with someone with Lupus.
Dating and commiting with Lupus is quite a difficult task

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Kristiana Page avatar

Kristiana Page

I'm sorry to hear that you haven't had such a great experience Martha! To be diagnosed so young would've been incredibly difficult, I got diagnosed at 20 and still that was a lot to take on board :(
I know that essentially it is selfish to ask a completely healthy person to commit to someone who is unwell but I always try to remain hopeful :)
I wish you all the best and send love from Aus x

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MJ avatar

MJ

Beautiful article!!! I met this beautiful woman who is having Lupus, we have met and I have a little crush on her. she is fantastic, Its seem like she have ups and down too and I read articles over and over to understand more the disease. I care about her and want to be there at her worse and her better. I feel like she is scared to commit and all i have been doing is giving her space when she go silent, and text her and there to say That i think about her and hope that her day is going well.
One day she say she want to see me again and then disappeared. She have been open about how she feels ect, I just have no idea what is best to do in this situation,You all women who have this are really strong and I cant imagine how horrible that could be to live with it always.

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Kristiana Page avatar

Kristiana Page

Hi MJ!
Sorry it's taken me quite awhile to get around to replying to some of my comments! I think that it's such a beautiful thing that you were doing for a lovely lady! Hope everything worked out for you! The world needs a few more people like you it would seem! :)

Krist x

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Joe Smith avatar

Joe Smith

No, my wife left me after 26 years of marriage because I was diagnosed with Lupus. She did not want to be with someone who can be sick so much. Young or old there is always people who will not commit. I would have stayed with my wife if she had developed a chronic illness. A lupus dating site could be a start.

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Mel avatar

Mel

Hello again Kristi -
I was wondering if I was sone how able to purchase your entire column, from its begining in 2016 to present in book or kindle format. Any information you have on this subject would be GREATLY appreciated....
Regards -
Mel
p.s. - Hope you're doing well today....

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Kristiana Page avatar

Kristiana Page

Hey there Mel,

Not that I'm aware, all columns are free to the Internet and I don't think there's any intention to make them into a book. Might be an idea for when I retire one day haha? If it ever happens, I'll be sure to send you a copy personally!

Best,

Kristi X

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Collin avatar

Collin

Hello Kristiana,
I recently started dating a woman who has Lupus. She's 24 and was just diagnosed in November so she's still coming to terms with it. I admit it scared me a bit. Knowing that if I fall in love with her I may be setting my self up for heartbreak that's out of our control. Despite that fear I know I want to be there for her. She's currently out of work and focusing on her health, but I can tell she wants to get back on her feet and continue working hard like she used to. I believe she can do it and I want to support her through this, but I feel like it's a hard subject for her to talk about in detail right now. So I ask you, is there anything you think I could do for her that would make her life better as she recovers? Anything you have in your life that I may be able to add to hers to help her keep fighting?

Thanks,
Collin

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Kristiana Page avatar

Kristiana Page

Hey Colin,
Firstly, as a fellow lupie of your partner I'd like to thank-you for taking the time to read up on parts of her condition and reach out. It might not seem like much, but that's a really thoughtful and mindful action that most people wouldn't even think to take. She's lucky to have someone as caring as you!
That is a very touchy subject given that her diagnosis is likely still very raw. Recovering from a flare, especially your first can take a really long time - I'm three years into treatment and still haven't reached remission - it's hard to be patient with recovery, but the more you try and rush the process the more you just set yourself back.
I know it's hard as there's very little you'll physically be able to do to help her, but the best things you can do are validate, encourage and support her. When she's feeling frustrated, hopeless, upset or angry remind her that she's going through something life altering and grieving is completely normal - all those feelings are incredibly valid! It's impossible to be strong 24/7 and there's no shame in being vulnerable. Remind her not to be so hard on herself, she didn't ask for this and it is not her fault.
Encourage her to set small goals and make steps towards where she wants to be, taking a quarter of a step every day still counts! It's not about making huge leaps and bounds it's about making progress, no matter how small. Not everyday is a good day. Fatigue is a nightmare I couldn't wish on anyone and early on, some days were "horizontal" days where even the idea of lunch is daunting. If she's going back to work, then ease back into it - throwing yourself in the deep end with lupus only seems to end in near-drowning.
The hardest part is working out the fine line between knowing when to encourage self-care like napping/resting and when she needs you to be the little push she needs to keep going.
Tell her "YES!" and by that I mean validate that she can do anything! Sure, she has lupus but it does not have her. She's young and still capable of so many things, lupus didn't take that from her. If she wants to give something a go, support her! Your confidence has the ability to empower her and at times she's going to need it, don't let her self-doubt stand in the way.
If she ever needs to talk, please encourage her to reach out either to me, to another columnist, to a forum, anywhere! No one needs to battle alone, we're a community and talking is healing. I'm always happy to chat, she can find me on Facebook and Insta, just look up my full name :)
If you take only one thing out of this, always remind her, she's got this!!
Hope I've been of some help, please reach out whenever you need.
Best,
Kristi X

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Heather avatar

Heather

Believe it or not, the being single does become a little easier as time passed. I'm now almost 40, have two failed engagements that both occurred before my Lupus diagnosis and am happier now than I was before all of this. It isn't easy, sometimes I do get lonely, but at the end of the day I do things that make me happy and make me feel fulfilled. It isn't for everyone, and I know a number of friends/family who worry about me still being single. All I know is that I'm happy and content, I'm doing with my life what I want on my terms, and not having a significant other isn't slowing me down at all.

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