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Discussion Starter · #1 ·
Howdy! My boyfriend and I have a long distance relationship so we don't get to see each other as often as we'd like.

He's a surfer so obviously he wants me to spend alot of time with him at the beach... not good for me. Managed ok with just short trips and keeping mostly covered up. The day before new years was terrible, struggled to get out of bed, couldn't face day light and could barely put a sentence together! Couldn't understand why I was so miserable that eve, so many people, music was too loud and I just wanted to sleep! So basically I landed up spoiling his new year!

Don't think I was very coherent but explained that constantly being in the sun breaks down my immune system and I'm more likely to feel ill. I don't think he took me seriously. At this point I was only aware of my DLE and didn't realise I was having SLE symptoms.

I know I should just be direct with telling him but I struggle pretty badly with putting my thoughts into words so I've printed some info on Lup from the net. I think I'm being paranoid that he won't understand!
 

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Hello Taree,
Well you don't want to go through anything like New Year again.

I wish you well with teling him.
x Lola
 

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Discussion Starter · #3 ·
Ta Lola

Definately not! I just wish I were better with the spoken word. Have been chatting to my friend Bron and she recommended i write it down rather. So I'm going to give it a try... rather sooner than later.

X T X
 

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Hi there,

You'll have to forgive me here. I'm going to be very blunt.

I really do hope that he will understand, and you may well be surprised at how he could take it. However, no matter what way he takes it, it has got to be said.

Although you are not the disease and we don't want such things ruling our lives, you do have the disease and if you are reacting in that way to the sun, you are not going to sudenly stop doing so. It is part of who you are.

Now either a person accepts another person as they are. Faults and all. Or they don't!

That may be a terribly simplistic view but having been through life and relationships that is how it is.

I'm sure there are ways of still enjoying a lot of things together but you cannot make yourslef ill for someone else.

Just my take, I too suffer extreme photosensitivity and there is no way I can go out like that during the day. My hubby and I go for walks in the evening, we go places where there is shade, we just live a little differently... you know surfing at dawn is cool too :)

Katharine
 

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Hi Taree :)

I agee with katharines good advice.

I do understand how hard it must be because you want to lead a 'normal' life & you may feel scared that you will frighten your boyfriend away but you do need to have an open,honest conversation with him explaining how the lupus affects your life.It is a part of you that unfortunately isn't going to go away.You can't risk making yourself ill again :sad:

you need to know one way or another taree if your boyfriend is prepared to compromise.hopefully you will be pleasantly suprised or it could also just take some time for him to adjust.I think this applies to all your relationships,either people will understand or they wont.


If it's any consolation I do know how you feel as I met my husband when I had already became ill..I was 22 at the time & went through all the fears & doubts of why he would want to be with a 'sick' person. :sad: when he had a choice..but my hubby always said that my health wasn't an issue at all,it was me he loved & it wasnt my fault I was ill etc he has always been understanding and supported me with my health thankfully.
I think we deserve that :)

Taree I wish you luck,I am sure it will turn out fine.
let us know how you get on please,will keep my fingers crossed for you.
:hug: take care...karen
 

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Hi Taree,

One way to be able to still watch him is to go very early in the morning before the sun is strong. You could even put up a makeshift tent to sit under so you wouldn't get much exposure. I would still limit that since you will get a reflection from the sand and water.

Years ago we used to have a sailboat. We spent every weekend and most vacations on it. Sailing was a way of life for our family. When the doctor said the sun was contributing to my flares my husband wasn't thrilled but understood. He continued to sail, but much less so he could spend time with me.

"Mr. Right" would not want you to suffer. Don't expect him to give up his passion but he should be willing to compromise to spend some time with you.

Take care,
Lazylegs
 

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I think you have to tell him it like it is, and if there are difficulties finding the right words or how to bring it up, you can find a brochure that explains lupus online (probably many sources for this). You can print it off, or get one from your doctor as they usually have them too. Then highlight the areas most significant to you and just have a very straightforward honest discussion of your new diagnosis and how you will need to adapt to better your health.

I am hopeful for you that he will understand. There is often an adjustment period for you to "get used to" your new diagnosis. And there will likely be one for him too - & your relationship. If there's no sign of improvement in the relationship after a few months and he still pressures you to do things you cannot do or makes you feel bad for not being able to do them, then it may be time to move on. Most men I think take it really well if you're in a loving committed relationship when diagnosed. If it was already on the rocks - then it will be more difficult. Good luck - let us know how it goes!
 

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:yes: Sounds like you are getting good advise from everyone!!:) I think that letting him know your limitations and explaining the illness will help your relationship, who knows he could be thinking "oh she doesn't like being around to watch me surf" when really its she can't go and watch you surf because it could cause a flare!
I think education is the best way to deal with this situation, reassuring him also is important too, if he means alot to you and you want to grow in the relationship than let him know how much he means to you and that it breaks your heart to miss seeing him surf but maybe you can do something else to make up for it!! :bigsmile:
True love is accepting someone with all there faults and gifts so no one is perfect and there is no garentee about ones future so one day everything could be fine the next day who knows so you have to love the person and everything that comes with that person!!:)
Good luck and I am sure that everything will be fine!!:thumbs:
 

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Taree,
I just want you to know that your health has to come first. For a lot of us we forget that at certain points in our life(yes, I used to put everyone else first). Telling your boyfriend is a great first step. The others are right if he understands that is fantastic and if he doesn't then he is not for you. I hope he is understanding. I also hope that everything works out the way you want it to.

Remember-the sun is our enemy-sad to say.


Hugs,
Becca
 

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Discussion Starter · #10 ·
Wow!

Thank you all so much for the advice. Up until a few weeks ago my knowledge of DLE was not to spend too much time in the sun otherwise I'd get lesions and have flu-like symptoms. I was also under the impression that SLE was just an amplification of DLE!

For the first time in 16yrs I wore a bikini on the beach and it felt GREAT! I'm normally the one sitting around in long pants and big floppy hat... the freedom was incredible. Silly me, I was on the lookout for lesions - I remember them well! As the days went by... no lesions... I thought I was safe. I know better now!
Luckily the best time to surf is earlier or later in the day. I usually spend a max of 20min out and am mostly covered. Clearly my poor body went into exposure shock!

I'm not surprised that my boyfriend didn't take me seriously, I didn't know what I was talking about at the time. I have tons of info now and a much clearer understanding.
I have printed some info for him and am looking forward to seeing him, hopefully in 2 weeks time, so we can chat about it. This also gives me some time to digest everything.

Thank you all once again, my dillema no longer seems as daunting! :)
 

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Discussion Starter · #12 ·
Ta Lola. Am just more tired than usual. Pretty much used to disruptive sleep but we'd argued the night before so woke up foggy.

Ta for the help, in one short sentence you helped me put things in perspective. Will keep you up-dated!

X T X
 

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Discussion Starter · #13 ·
Once again, thank you all so much for all the advice... thought I'd give you the conclustion...

My relationship is over. Didn't get a chance to tell him about lup -don't know it the little I mentioned played a part.

This is not an invite to a pity party, we are both stubborn as mules and it takes 2 people to make or break a relationship, we just couldn't find a compromise.

Thank you for listening
 

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Hi Taree,

I'm sorry to hear that your relationship is over but please keep in mind that some people are just not meant to be together and it is never ever an option to be doing everything to "hang on" to someone. If it is that hard and taking so much effort then it won't last.

You will one day meet someone as wonderful as I have who just takes you for you with all the little particularites that make up a person.

I'm sure that you will have learnt a lot throught this process and never forget that you SHOULD expect a lot from someone because you are special. You are NOT damaged goods; no more than the future "he" would be if something happened to him and you had to adjust.

Katharine
 

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Discussion Starter · #15 ·
Ta Katharine

Am going through the heartbreak/healing process... gona take a while. Luckily not into the whole... men are evil and I'll never date again!

Things happen as they must... I've got patience...:)
 

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There are a few totally "non evil" men put there just waiting for us :rotfl: you just have to never accept second best. You are woth the whole world to someone, he just doesn't know it yet as he hasn't met you!

Katharine
 

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(((((((Taree)))))))

The heartbreak and the healing parts are tough :hugbetter:

Hang in there. Just go with the flow. It will be okay soon.

Take good care
Joan:rose:
 

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Hey there sorry it didn't work out, you know the most important relationship you need right now is with yourself, you need to take care of you so that you can get feeling better, NOT EASY I KNOW ( I am flaring)
You never know maybe time will allow him to think and miss you and it may not be officially over, but in the mean time focus on yourself and in time everything else will fall into place...God has a plan for us and we never know what it is, but the things that are hard for us now, make us stronger in the end.
Who knows mister right might be moving into your neighborhood right now!!
 

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Discussion Starter · #19 ·
Here I was thinking I'm a hardcore/unfeeling chick... I hadn't cried when we broke up... was cooking dinner the other night and it occured to me that it was something he'd really enjoy - I never really got to cook for him- to say I bawled like a baby with a poopy nappy is such an understatement! I had no idea chicken could have that effect on me... I'm thinking of patenting the recipe and selling it to Doc Phil as a stress relief tech. Somehow don't think it will work for everyone but you'll get a yummy meal out of the deal!:)

Cispence... He mentioned spending time on the beach in a previous conversation so I told him bout my photosensitivity. I'm still paying the price for my "fun in the sun" over dec. If I had any hope of getting back together he sealed the deal in our last argument... I was accused of "not liking the beach"... He's a logical thinking man and there's nothing logical bout lup. When he gets upset he aims way below the belt... I'm glad I didn't tell him more. If I'm truly honest though, I've been tempremental and confused lately... he says I'm not well in the head. Which is so funny to me because I reeally am not!:) I'm so sorry to hear that you are flaring and I hope you're feeling tons better very soon!:) :)

Katharine... Thank you so much for helping me by-pass the pity me, I don't deserve love phase completely! Especially since I know you really weren't well at the time... so glad to hear you're feeling a bit better!:)
 
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