Around 60% of people with Lupus will struggle with sun sensitivity. It can cause a flare-up of symptoms or cause rashes and symptoms of sunstroke. Some people also suffer from light sensitivity and will struggle with some artificial lighting, fluorescent lighting for example.
So how do you deal with sun sensitivity? Sun sensitivity can be a challenge, especially if you are extremely sensitive even to winter light. There are precautions you can take like, wearing suncream, using a sun umbrella for shade and UV clothing.
I, personally, had a strong reaction to the sun even in the winter months on cloudy days! Every part of my exposed skin would go red as if I had a sunburn and it would itch and burn terribly. My eyes and lips would swell and I would feel generally unwell. Another time I ended up in the hospital after a sunny day ( I didn’t know I had a sun allergy at this point or Lupus) I had a terrible migraine and vomiting, I was confused and my temperature had dropped although I was sweating badly!
Since being on medication I don’t tend to get the obvious reactions but I can feel the energy draining from me after just a few minutes of sun exposure and I will start to feel nauseous.
I also find indoor lighting a problem, being on the computer can cause me to feel nauseous and give me a headache. In the school where I was working the fluorescent lighting would cause my eyes to swell and feelings of nausea. If I go into a shop with certain types of lighting I will end up having to leave as I will begin to feel really unwell. Even in my sons’ room, he has a bright lamp for reading and if I spend time in his room while it’s on I will feel unwell.
For some their sensitivity is so severe that they need to block the light from coming in through the window. I will struggle if the sun is coming through our kitchen window and I am working at the sink, also if the sun is pouring through the car window.
So what can we do?
Well, an obvious first step would be to avoid the sun when possible and seek out shade.
Also wearing a high factor suncream, remember to apply enough and apply regularly throughout the day. Also replace suncream after 12 months as it loses its UV protection over time.
A wide-brimmed sun hat and sunglasses.
You can also purchase UV clothing. You can buy just long sleeves or t-shirts, shirts, hats, scarves, trousers … all sorts really. This is incredibly useful for keeping comfortable and safe out in the sun. The material is usually breathable and anti-sweat! It will lose some of its UV protection through repeated washing so it is important to bear that in mind.
It is also possible to buy UV protection that you add to your wash and it will make your clothes UV protected. I don’t have any experience of this though.
When I am out and about I use a really pretty sun umbrella. I find it really helpful for the school run or walking in town and also at the beach. I do also try to walk in the shade and definitely don’t sit in the full sun! Just be aware that you are likely to get comments, ‘it’s not raining Luv!’
If you struggle in the car you could tint the back windows and screen off the back so the sun doesn’t come through. You can also get a transparent film you could use to stop UV rays, this can also be used on your windows at home.
In the workplace, it is reasonable to ask for shades over fluorescent lighting and if you need to be by the window, some film to stop UV rays.
I find that using glasses that block UV and blue light helps me when I am shopping or if I am on the computer.
It makes sense to try to stay out of the sun between 11 am and 4 pm. I love to cycle but we either plan our trip for first thing in the morning or during the evening.
I used to love the sun and it loved me back! I could be in the sun for hours, not burn, not feel any ill effects! Now it’s a different story but I am able to work around it! I miss being able to be free and spontaneous, now trips out have to be planned and I have to use various things to help me stay well, but I am getting used to working around my Lupus.
In the beginning, I felt silly with my umbrella and all my ‘rules’ surrounding the sun and fluorescent lighting, I felt like I was being difficult and I also don’t like to stand out so I was just wanting to fit in. However, it makes such a difference to me and helps me to keep healthy and that is better for everyone!
I figure that its much more of a spoiler if I end up ill in bed for a week than if I have to take precautions but stay well.
I think that the key to living a good life with any chronic illness is an acceptance that you are poorly and doing whatever you can to keep living and enjoying life. We need to make adjustments to enable us to enjoy our lives and to feel fulfilled and keep well.
If you are sensitive to artificial light at work it is a reasonable adjustment for your employer to correct the lighting for you and it will likely be a simple fix.
I also had to be allowed to skip playground duty if it was very sunny and also to not attend school trips which involved being outside. I felt like I was a bit of a pain but all my colleagues understood and were supportive and it soon became normal… they would automatically adjust things without me having to say anything.
It is important that we Lupies and chronic illness sufferers do take steps to minimize the effects of our illnesses and stay as healthy as we can. It’s not selfish its better for everyone, you will be better able to fulfill your roles in life if you are as well as you can be. If you are clear about the adjustments you need to make then others will plan around you!