Last updated: October 2021
It suddenly dawned on me yesterday that I have spent half of my life being sick and it’s a pretty scary thought! I was diagnosed with lupus about 14 years ago although I was poorly for about 5 years prior to that. One thing that has become apparent over that time is how sensitive I’ve become and when I say sensitive I mean in every sense of the word - both physically and emotionally.
Pre-lupus, I was not sensitive
Pre-lupus I would say I could deal with intense situations pretty well. For example, I worked at the airport dealing with hundreds of passengers on a daily basis, often some would be quite rude and demanding but I just seemed to take it all in my stride and it wouldn’t affect me however these days I struggle to cope with making a simple decision and I get overwhelmed really easily. I also tend to avoid crowded places as I can feel quite anxious.
Sensitive to light, sound, and more
It’s not just the emotional side either, it’s the effects of external stimulus too. For example, I have such a hard time tolerating bright lights and loud noises. I literally jumped out of my skin earlier because my radio came on too loud and it startled me. I find I have to wear my sunglasses even when it’s a cloudy day because I’m constantly squinting and I get a headache.
Of course, as we all know with lupus we have photosensitivity to sunlight so that would explain it although I’m not so sure about the sensitivity to noise as well?
I have developed food sensitivities, especially caffeine and gluten. I have to be careful which washing detergent I use as some cause me to itch and I come out in a red rash and the same goes for shower gel and shampoos. I also find that I can't tolerate alcohol anymore as well.
Research on sensory processing sensitivity
To my curiosity, I saw an article in Psychology Today about a psychologist named Elaine Aron who has actually identified that a percentage of the population has a personality trait known as "sensory processing sensitivity" or SPS for short. I found that very interesting as I can identify with having most of the traits which are what I’ve mentioned above.
I find it really interesting because I wonder if it’s the effects of lupus on my body that is affecting my nervous system in some way causing this or is it simply from being so worn down from the challenges of having lupus? Perhaps a bit of both.
It can be so challenging when you’re dealing with feeling sensitive in so many ways on top of having a chronic illness but as a positive I know it’s made me more empathic and compassionate towards others in this world so I’ll take that as a blessing.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?