Relationships and Lupus : Hey Guys I have... - LUPUS UK


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Relationships and Lupus


Hey Guys

I have managed to avoid this conversation for 5 years!

Yes no relationships no dating for 5 years

With all the encouragement/ pressure/badgering from my friends and family

Lee-Anne you’re so pretty you shouldn’t be going out on dates? Why don't you have a boyfriend? Aren’t you lonely? Don’t you want to get married and have kids?

I just didn’t feel ready and I still don’t know if I am but I probably shouldn’t wait too much longer.

I can’t get my head around how I would explain my situation to a potential suitor

One day I seem fine then I’m tired then my arm hurts then my hip hurts

Plans will be canceled now she’s not answering her phone.

I had a friend call me lazy because I canceled her and I was livid (She probably won’t make that mistake again) but I don’t know how I would handle it if was a boyfriend or potential boyfriend

Or dates…. Most nights I’m in bed by 8 pm if not earlier. I’m hardly the party girl I used to be… heels, makeup and most hair styling equipment is now out of my vocabulary

I can’t picture someone who is going to find all of this attractive

Also, I don’t have the time or patience kiss frogs or deal with some of the drama frogs come with to get to the fairy tale ending.

Honestly, guys, I have no idea where I am going with this post but I would love to hear your thoughts

12 Replies

Hello wotshernameagain,

First, I should come out as 1. a man 2. 103 years old (actually 57 but, you know, "you're as old as you feel") 3. not considering an "intimate relationship".

So for what it is worth, my thought would be that any chronic illness with significant symptoms is going to be a barrier to making relationships. It will definitely put off some people. But I do know lots of people with different kinds of chronic illness - both physical and emotional/mental health problems - who manage it all the same. And not just people whose illness has developed after the relationship has become established.

For me, the important thing is honesty and openness from the start. If you can't cope with being out later than 8pm, say, "I can't cope with being out after 8pm, because I have a chronic fatigue condition". If that puts them off, then far better to find that out now rather than a year or two down the road when you have invested your hope and your heart in a relationship that isn't right. You need someone who sees and values the courage and strength you have gained through your experiences, not someone who will tolerate you despite them.


Vbutton in reply to whisperit

The start of this made me laugh! Thanks for adding humour to make the situation easier for this woman!

I just had this issue myself recently, and asked a similar question! I didn't date for a decade. Yes, really. Thread is here:

Lemme tell you what I did: first of all, after a long time of thinking I'd be 'lucky to get whatever I could', I stopped that right away. There is zero reason to kiss frogs at all. As you said, you don't have the energy. So don't. Don't even offer, don't even do it because someone is a Nice Guy (which means they usually aren't) and say you need to 'give them a chance' - no, you don't. You don't owe anyone anything. You owe it to yourself to not lower your standards because, again, you don't have the energy to deal with the rubbish.

And that applies to all those questions people ask you. Maybe you don't want to get married or have kids. That's ok. Maybe you're happy being single. That's also ok. There is no requirement, no standards but yours.

When I started dating again, coming from a person whose past dates have been such epic failures I could write a book (the guy who was thirty years older than the age on his profile? The guy who was not only married, but deaf, so he took out his hearing aids so I wouldn't know he had a disability and spent an hour yelling at me? Oh yeah, I could tell some stories...). So I stopped giving everyone a pass, and I only went for people who truly interested me, with no expectations other than making sure I'd have a good cup of coffee, hiding nothing - because I feel honesty is the best policy, and I got tired of seeing the looks people gave my crutches when I'd go somewhere. Not that I wasn't monumentally stupid and tried to walk around the Avebury Rings with the Dutchman the first date we went on (omg, I was in so much pain).

A person who cares will be ok with you cancelling on you. Actually, a person who cares about you will listen to all those squicky conversations you're not sure you want to have without freaking out, because they care. And if they don't...don't waste any more time on them.

I wish you luck! If nothing else, let it be an adventure, and a fun one at that, not an ordeal of cosying up to amphibians for the sake of well-meaning but perhaps ill-advised concern from friends and family.

whisperit in reply to Silvergilt

Even speaking as an amphibian, that's a great answer, Silvergilt! Avebury is a fabulous place, though, isn't it? Hope you've managed a return trip sans pain x

Silvergilt in reply to whisperit

Ribbit! :D I don't believe you're a frog for a moment! But yes, we are hoping to do an anniversary-type visit to the rings annually, even if all we do is stay in the coffee shop as I am absolutely FORBIDDEN to walk about like I did the first time. It really was stupid, tbh - I drove home and hit a harsh bump and screamed at the jolt of pain it sent through my spine. I'm a stubborn moo at the best of times, but Dutchman is more stubborn still. So it will be powerchair for me.

1sam in reply to Silvergilt

LOL great stories ! thank you, a friend of mine was close to convince me on the goodness of apps such as Tinder etc. Dear!

Don't! I went on Tinder for a while so many horror stories lol 😂

Thank you so much for this post! I'm going on a date to day woop woop

wotshernameagain who are you and why you wrote my life? LOL

Our bodies have this illness, not our souls. You as a person, have inmense value and a guy with good heart will know how to appreciate the real you, not the time you spend applying make-up or doing your hair.

Thanks 1sam


Hi wotshernameagain,

I'm gathering you're around my age (I'm a day off being 30 as I type), so I'd like to share my experiences and a few opinions with you.

To give you a bit of background, I've suffered the first symptoms of Lupus when I was 11, though it was not until I was 20 that Lupus was suggested and I was 24 before I was diagnosed officially by Prof. Graham Hughes. By which time I had lots of damage to my kidneys and other organs, had suffered strokes, cardiac arrests and was very unwell. Once I was on the right tracks with doctors, who could see the bigger picture, I was also diagnosed with APS, Sjogrens, Autoimmune Hepatitis and various other autoimmune conditions with all their glorious effects. I'm treated with so many medications I can't count and have only private medical care (huge expense!) after bad experiences under the NHS, but am so fortunate to have the right people helping me. At age 12 I was badly injured when I was hit by a car and need joint replacements, which I won't be getting anytime soon. Added to that I have a condition called CRPS (a chronic pain condition) after an injury nearly 6 years ago and then 3 years ago fell down the stairs and broke my spine (among other things) but a combination of my conditions and medications means healing is a very slow process.

Despite all that and spending half my life in the hospital, I own and operate 3 companies, along with a portfolio of investment property. I know I won't be able to do this forever as it really does take it's toll, but it's my preparation for the future.

As far as relationships go, I've always believed that the best partnerships start off as friends first. I hate the concept of dating, because apart from anything else there's a level of expectation, often on both sides and the risk of rejection and heartbreak become greater. I suppose it depends what you're looking for, but personally speaking I think contending with a condition such as Lupus is hard enough without involving yourself with people who make your life more difficult and who ultimately don't deserve you, which comes with bad relationships . As a result, I've always been more concerned with building a friendship with a potential partner, rather than trying to make it a romantic relationship from the off. Any partner should after all be your very best friend and we should be able to be ourselves with our real friends, including when we're having bad days with illnesses. Ill health is after all part of life, especially in the long term. I always maintain that in the wedding vows "in sickness and in health" it's very relevant and telling that the sickness comes before the health.

When it comes to meeting new people though (male and female) in social situations, while it's obvious to see that I have some health issues (I need a special type of crutch to walk and sometimes my joints that need replacing are in supports), I'm always very open about my conditions and do find there are opportunities to talk about it casually. For example, because the Lupus has effected my kidneys so badly, I often have to restrict my fluid intake. Therefore when offered a drink, I'll ask for a small orange and explain that I'm teetotal and only drink small servings of juice because I have a condition. Similarly, I struggle with what I can eat (allergies to everything and reduced appetite etc), so this gives an opportunity for conversation. You don't need to go into great detail, just a short, honest explanation. I'm very photosensitive so apply sunscreen every day of the year when outdoors. This goes unnoticed in July, but in November people will often ask me about this, so I just tell then simply that I have a condition that means the light makes me ill. It's advice I'd give to anyone and it's simple enough but just be yourself. I have at least one hospital appointment every week, so when people ask me what I've been up to, I'll always throw a mention of that in, casually but confidently. If anyone, a date or otherwise doesn't take you as everything you are, including any medical condition, they don't deserve a place in your life anyway. Anyone worth it will be genuinely interested, listen and maybe even ask questions to understand. Anybody put off my any of this or because you don't do late nights is best to know about sooner rather than later.

I very much wish you all the best in hope you find somebody deserving of you!



wotshernameagain in reply to Hidden

Hey Kate thank you so much for replying to my post you sound like such an amazing person! #girlboss

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