How do you explain to others your sun sensitivty?

[SLEEPY101]

I have Sjogrens and Lupus so the sun is my biggest enemy. Tomorrow is an all day family reunion on my husbands side. It has been 109 this week and even if I sit under a tarp all.day I willbe sick and in a lot of pain. So I decided to call my Mother n law and explain to her that I will go t the reunion in the evening. Her response was she isnt supossed to be in the sun either but she was going to hang out under a tree all day. I know.I shoildnt care what other think but it is hard. How do you explain to your family.and friends when you cant attend functions?

[slccom]

I have to say, I couldn't possibly care less about what my MIL thinks of me. My very existence offends her. Can you establish a nice place inside in the air conditioning to set up court, and have your hubby send people in to visit with you? That is what I do with my hearing loss, or did before hearing aid technology improved to the point where I could hear (sort of) in noisy gatherings.

However, resting and coming in the evening makes a lot of sense.

Have fun! Sharon

[Gayle]

Hi Sleepy,

I think you have a great plan. She may be less injured or less effected, by the sun than you. If you do it, it is a real game changer. Go at night. It is perfect solution. If any one asks, tell them you are allergic to the sun and the heat makes it even worse. No other explanation is needed. Have a fun time!
Gayle

[quietdynamics]

109 degrees and Asthma??? That's not a good combination.

Slather those kiddies with sunscreen...hope they have a sprinkler going.

Have fun at the reunion in the evening, you saw a problem and came up with a solution...

[Scottietottie]

Hi 

I think you just have to be really honest and say you can't do it. Just say that if you do it - it will make you really ill - so you have to steer clear.

Good luck.

Take care - Scottie 

[valene2009]

sleepy.. i cant even go outside in that kind of weather and im 37.. my family and close friends understand-most do--the ones that dont are the ones who are very 'black & white" and its not their fault..

if i have to go to any dr apts i have someone take me to the door -otherwise i cancel.. we had a heatwave like that for 10 days..my sis had to get me groceries..

wow..good luck but dont hurt yourself trying to be like the others and tolerate the heat... i went to a church social a month ago and it was only in the 80s but wth humidity and being on blacktop i got sick for the rest of the day-and according to my mother i was acting "high".. whatever that means... i had heatstroke for sure..slightly... 2 years ago i ended up in the ER. 
just be careful..

and remember a lot of people with all kinds of conditions are sun and heat sensitive... not just sjogrens and lupus.. u wont be the only one...

[iraisin]

Forgive her for her ignorance and be yourself and keep yourself healthy. A lot of people don't get this, a lot of people judge and won't take you serious. It's all based on ignorance and the lack of will to get educated on the subject. When family does that it hurts, but family members are human nonetheless.

I'm sure in her mind, she wants her son and his wife to be there to help represent her. That's normal. So she does want you to go, and she is speaking more from that mindset and not really spending the energy to understand yours.

If going in the evening is a doable thing, that won't make you sick, then do it, and enjoy your family. If going in the evening is a guilt compromise that will make you sick, just not as sick, that may not be so good either.

No one deals with your issues for you in regard to your ailments. These things are yours to deal with. So listen to what you know and do what you are willing without guilt. How they perceive your actions is their problem, not yours.

[engy]

If you plan to go I agree you should go in the evening & make it a brief visit.  If you haven a battery fan take it too.  Lots of ice water.

It isn't easy to explain, especially to those who don't really care so try to spend your time with those you want to visit and enjoy. I had a similar experience recently & it worked out ok & my family was surprised & happy that I lasted 4 hours. The ones who were rude & didn't believe me? They are ignorant & I'm over it.

Take care of you hon & do what you can.

[SLEEPY101]

Thanks for all the wise replies. We'll see how tomorrow goes. Tonight @7pm it was still 100 outisde. If its like that tomorrow I won't go at all. Which my husband thinks might be best because he doesnt want be sick in bed for the next week. So I will just play it by ear. I wish they would have thier reunions inside like my family does

[gurs]

***put yourself first***** yes, I have the SS/Lupus combo too and this heat/sun just setting me off big time, as well as the
allergens. I dont care how many times I tell my family/friends, they just dont get it, even though I look sick as a dog as well.
I have the brown spots (melasma) all over my body, and I always have burnt red chest and neck area, cheeks too, and I dont even go outside much at all, and wear sunscreen all the time.
I think its the heat that does the most damage..prob causing more inflammation.

Gursie

[mshistory]

I also have SjS/lupus overlap and won't go in the sun unless I have to. I have lung disease and the heat and humidity are TERRIBLE for my breathing.

I get comments from family members (mostly my father who thinks he knows everything - he means well, but he also thinks sunshine and aspirin can cure anything). I just keep telling him I would rather not break out in rashes, be in terrible pain and completely exhausted for days. I've also told him he should read The Lupus Book when he makes a dumb comment about my medication or something...