Advise please

[Bronn]

My friend visited yesterday and I stayed out in my courtyard a bit too long, and payed heavily for it today, (even tho I was in the shade and protected). My friend whom I've only know a short while, doesn't really understand Lupus and what it can mean to me. She loves the sun, and as soon as it appears she's out and doesn't use any suncream hat or shade. So how do I tell her the precautions I need to take and why without scaring her off. She's a bubbly person and since her divorce what she wants to do she doesn't let anything or anybody prevent her. I don't want to lose my friend, but as I get more sick I'm worried how she'll cope. Tact isn't really my best fortitude and I don't want to hurt her feelings or lose her.

[linicole]

Hey Bronn, I had similar situations with my friends before. I don’t have very strong reactions to sunshine-a bit dizzy and tired, but I know it is not good for my health. I told people who don’t know about my lupus that I feel dizzy under the sun so I need some sun protections or I let them know I will rather not participate in those activities. I shared with my close friends that I don’t want to miss the opportunities to hang out with them, but I can’t always do the outdoor activities because like you said “payed heavily after being exposed to the sun”. My close friends are pretty understandable and I think it is a great chance to be vulnerable and honest to your friend. True friends will stay and respect your decision. You can also encourage your friends to do more research about lupus Increasing awareness helps a lot. Getting sick is not your fault and we are learning how to accept what we can do and can’t do. The journey isn’t easy, but with friends’ support, it is easier. Let me know if I can help anything else!

[Bronn in reply to linicole]

Thank you linicole, think I'm going to have to educate my friend a lil, going to be a lil funny tho as she's a teacher lol. Yes the awareness the better

[HazelW]

If you don't tell her how can she know. Explain it to her without making a big issue of it then reach a compromise - she soaks up the sun, you sit in the shade. If she really is a friend she'll be fine with it. If she can t handle it she's not a true friend.

[Mifford]

Why on earth would it hurt her feelings if you cant sit out for that long? I think in that situation I’d simply say to her after a while I’m sorry but I really can’t sit out in this heat because of my lupus then if she asks explain that you have a condition where your body attacks itself and nobody knows why but the sun is a trigger for it whic( makes it dangerous for you. If she pushes then just tell her it’s under doctors orders. Firstly any kind of friend wouldn’t push anyway and secondly if she does is her friendship worth risking your health for?

Maybe it’s as I’ve got older and realised how ill things like that make me but I wouldn’t even feel a need to be apologetic for it and would just go in if I needed to - your friend doesn’t have to do the same if she doesn’t want to and there’s nothing stopping her staying out. As you said your friend doesn’t let anyone else stop her doing what she wants so i; the nicest possible way maybe take a leaf out of her book and steal some of her confidence to simply say sorry I can’t do that. If she’s any kind of friend she’ll understand but as already said if you don’t spell it out you aren’t giv8ng her the chance to be a good friend in return.

[honeybug in reply to Mifford]

😊🌸🌿🦋

👏👏👏👏my words exactly very well said!!!

😊🌸🌿🦋🤗💕😘

[MandaM]

Hi. You just have to be truthful. We Lupies burn for England. I deep burn on the cloudiest of days. Any true friend will understand and would not make your life harder than it is already.

[leslieliesel]

I let my friends(I have just a few) know I can not be out in the sun, and get so TIRED.. I gob on sunscreen, wear UPF clothing etc(which I do for gardening and hanging out with my grandchildren).... I let them know again, when they forget....When I am asked to do something and do not feel up to it, I say thank you, and don't stop asking, one time I might have enough energy to be with people...also If my husband and I are at friends for dinner, when I hit the wall, I just say..I have to go home now....I'm 63..I can no longer grant everyone's wish....I feel as if this sounds angry...I'm not, I'm tired Xx

[Bronn in reply to leslieliesel]

Best wishes to you leslieliesel, I'll take a leaf out of your book, firm but not rude. After all my health is more important than staying out or doing too much just incase I offend.

[Bronn]

Thank you all for your advise 😀 My friend came over today and we had coffee/cake and a chat. She's more in the know now, didn't overload her too much this 1st chat, we sat and she helped me search the net for accessories to keep me sun safe 😃 So thank you, 1 friendship well and truly safe 😄

[slcoppedge]

I am certain that not only will your friends understand, they will feel awful when they find out (if they are true buds). So tell them!!

That said... I haven’t been diagnosed with Lupus (bloodwork doesn’t report anything). But, every time I come on this board for an answer (I have found many), I see something like this that I can relate to. I live in Florida but if I get hot I swell up all over my body (and my A/C doesn’t work great 😒). That and it’s like pins and needles in my back in direct sunlight sometimes. I just wish I could get an answer. I’ve never had the butterfly rash but it makes me wonder. I will start a new post with a pic. I JUST got out of the tub so I snapped a pic. No filters. No makeup. No cropping. My naked face in all its glory!! Do you agree? No rash?