I've very recently been diagnosed with Lupus and am yet to begin treatment.
I have a few questions if you could be so kind to help me out. .
Firstly how to protect my skin from the sun?? I've been using SPF50+ sunblock and I'm still reacting. My skin is permanently red. It's becoming embarrassing now and I'm avoiding going anywhere to avoid the strange looks. Please tell me it gets easier?
Staying away from the sun or people isn't sustainable in the long run so how does everyone else cope and get on with their lives?
Secondly have you told work about your condition and if so what sorts of reasonable adjustments should they be making? I'm a teacher and don't really know what adjustments I need or school can accommodate.
Thirdly any tips or advice that makes your day to day life with lupus a little easier?
Thank you
Written by
Rajmachawal
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Get yourself a good sun hat and wear sunglasses all the time. The hat is the main thing for me, the sun makes me feel like I have sunstroke and want to lie down. Just keep covered as well.it takes a while for medication to kick in which will help a little. Keep putting on your factor 50 suncream as well. It’s a bit of a pain at the beginning but it gets easier. Have you seen a dermatologist who may help you with skin problems, I get prescribed a few creams but it’s mainly for the rashes I get. Would a foundation also with spf dull down the redness a bit on your face. It’s trial and error. Best wishes
Hi Rajmachawal. I have found a hat to be essential.and.never go out without one on. Solbari do good SPF 50 hats with wide brims. Bit pricey but worth it. They also do clothing, I've found the SPF 50 poncho to be really useful. And I bought an SPF umbrella from Amazon which is good if I'm going out all day. I reapply sun cream at the recommended 2 hours, even if I'm inside as it's the UV that gets you. My dermatologist said don't use SPF foundation as you don't apply it to same thickness as you would suncream. I still get a bit reddish with all of that but it seems to keep it from getting really bad. Staying indoors is the ideal but I would go mad! Hope this helps. I work for myself so didn't have anyone I had to inform.
I'm a primary school teacher and there's not a lot can be done at school due to the nature of the job. I find a large SPF umbrella the best protection from the sun on playground duties as it shades most of the body and hands too and you can just grab it when you need to. I wear a big tight-weave straw hat and sun block on windy days or on trips, when you can't predict the conditions. If you hold clothes up to the light, you can check how much they block and then it's just face, neck and hands to worry about. I wear cotton gloves for driving and have made wrist guards out of old socks as sleeves often ride up. You'll soon find what works for you and eventually it will all become second nature.
I was a teacher and I asked for UV protective film to be put on the fluorescent strip light that was in my room. You could also ask for film to be put on the windows. UV still comes through windows it is not just about outside.
Outside, I wear factor 50 long sleeved t-shirts and shirts and always wear a hat or cap with a large brim and sunglasses. You can get some nice smart ones so these will still look good in the workplace and will protect you on playground duty. I also have some factor 50 protective trousers if I am going to be outside all day - these will be useful for school trips.
You will find out by trial and error what is the best balance for you. Some people are more affected than others.
There is such a lot to take in when you are newly diagnosed. Take it step by step as things arise. Don't be afraid of asking questions on here. There will always be someone along who will be able to offer support and ideas.
Welcome to the group. I’m sorry to hear of your recent diagnosis of SLE and are awaiting treatment.
I have SLE which affects my skin greatly and am extremely light sensitive. I was diagnosed 10 years ago after 2years of mid-diagnosis.
To try and answer your questions I will use my own experiences, but please remember that Lupus affects everybody differently and what works for me may not work for you and you should always take the advice given by your dermatologist and rheumatologist.
Regarding protecting myself from the sun, I use SPF50+, wear a hat (I like the vintage style hats - adds a bit of mystery to me by those that stare at me!; wear a scarf (not a knitted one, a cotton lightweight one - I’ve lost count of how many I have, I think I have one for every outfit I wear); leggings; trousers or long dress (if I wear a short skirt or dress I wear leggings underneath) long sleeved tops (lightweight).
I get on with my life by ignoring those that stare -yeah I look different, but I’m enjoying my life and I dress the way I do for a reason!
If I know I’m going to have a busy day I make sure that the following day is kept free so I can rest.
I told work that I had Lupus as soon as I was diagnosed as it is classed as a disability. I work in an office so the reasonable adjustments I requested were - not to be sat by a window; lights overhead my desk to be dimmed or switched off completely; window blinds that actually work and when in meeting rooms the facility to dim the lights.
My organisation also has an intranet that individuals can post blogs on. I’ve written two blogs so far, a) to raise awareness of Lupus and b) to explain how it affects me and why I dress the way I do. I had a lot of responses to both blogs and it was surprising to learn just how many people have autoimmune conditions.
I have designed a presentation to give to the whole office, but have yet to present it as each time I feel ready to present I’ve had a ‘flare’ and have not been well enough to present. It’s certainly on my to do list.
‘What makes day to day life with Lupus a little easier’ - being kind to yourself & listening to your body -if you feel tired, rest; don’t plan to complete large projects in one go, break a project down into manageable steps and rest in between.
Everyone who's replied has given such good advice but I wanted to say how much I loved the idea of educating your fellow workers through your employer's intranet. I used to teach in FE and could have done the same but never had such a good thought as Pegy. I used to avoid talking about Lupus as I didn't want sympathy or to bore people but online would have been so easy and also reached other members of staff with the same diagnosis. Well done Pegy. 👏🏻👏🏻👏🏻
I have ordered a sun hat from solbari. I cover up as part of my religious practice so really only need to have something for my hands and face.
I'm currently suffering from the worst lupus face rash I've had and the medical treatment can't start sooner. I'm working on ignoring those that stare. It's a work in progress as currently the way I look has massively knocked my confidence. Then being around teenagers all day who aren't the kindest doesn't help.
I have spf50+ sunscreen. I'll remind myself to apply every 2 hours.
The advice about work lighting is very useful. I will speak with my principal at the soonest possible time to request these.
I do feel a bit better right now I've but some practical steps in action
The weather's so nice finally and I felt awful not going out .
I've been grappling with sun exposure too. I've found that the sunscreen and hat are super helpful. Also covering my face, yesterday someone in a car slowed and pointed at me, I deal with that by thinking at least I can outside.
It takes some getting used to but now my sunscreen is a two hourly ritual. I also use rosalique on my redest bits, it helps tone down and is also spf50 but as someone else said don't use it instead of sunscreen but on top.
I bought some long tops with thumbholes which cover most of my hands.
Hello there - excellent advice given by everyone. I just wanted to add that if you found yourself having to do sports activities/sports day etc with the children then you might want to look at some sailing sport outfitters. Sailing tops are usually spf 50, often very light and long sleeved and some hoodie like. I’ve brought some a couple of sizes up (so that they’re nice and airy in the heat, HellyHanson ones) and find them invaluable when I’m out hiking or cycling. These ‘look the part’. Usually you can get them quite cheaply in the Autumn at the end of the sailing season. Also a number of sports brands sell spf leggings. Have a Google :). Very best wishes to you :).
I have SLE, I will say this as a woman that was an avid fisherwoman born and raised in the Caribbean. You have to protect your skin and the sun is not your friend. I know it’s hard to imagine all the preventative measures needed to protect yourself from the sun. After many all day fishing trips, only to be laid out with flare-ups I had to submit. Did I mention very dark skinned 🤗🤗
Hi Rajmachawal, I can’t help you on the skin front, as mine has been OK in the sun. But I can tell you that work accommodations depend on your work role, your particular symptoms, your flare-ups and your relationship with your manager.
I have arthritic knees and I find a footrest under the desk helps with that. I work part-time because of the fatigue; it’s still bad, even at part-time, but it’s so much better compared to when I was working full-time. I schedule breaks into my day (and take them) to allow for bad fatigue days. I get out of the office every lunchtime; there’s something about getting out of those 4 walls that is good for the fatigue, not to mention my mental health. I am strict about leaving work on time (unless there’s a genuine emergency—rare), and I refuse to do evening work due to the fatigue. I’ve tried it before, and it was a disaster! Luckily I have great managers who truly respect my limits. I haven’t told them I have lupus, only that I live with chronic illness, and they seem genuinely supportive. This also helps when I have a flare-up at work; there’s been a few times I’ve had to go to my manager to tell them I’m calling an ambulance, and having them in the know goes a long way during an emergency.
Day-to-day living is harder, because there’s so many things that can go wrong, and they always go wrong at the worst times. But I try to pace myself, to rest before I need to, and to communicate early when I’m with others and start to develop symptoms, just in case I need to pull the plug on shopping or whatever we’re doing. I still mess up—our bodies can be sooo uncooperative and unpredictable—but I’m getting better at saying, ‘Can we stop?’ before the exhaustion sweeps me off my feet.
I take breaks when chopping veggies because of the pain in my hands. I allow a lot more time to get things done. When I have big plans coming up, I plan heaps of rest time beforehand and afterwards. I use a recliner chair at home, which helps a lot with the knee pain.
There’s much more I could say, but the essence of adjusting to your illness is getting to know how it behaves and adjusting accordingly. There will still be flare-ups and unpredictable things that come out of nowhere—none of us can prevent that—but most of the time, you will be familiar with what lupus is doing and what your body needs. Be patient with yourself. It gets easier in time. 🌻🌈
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