“Why are you so tired? It’s just a rash.”
“Stop being so lazy!”
“You can’t possibly not want to go out tonight.”
If you’re living with chronic spontaneous urticaria (CSU), chances are you may have heard something similar to this before (and you probably wanted to scream). Most people who don’t have CSU see it as a skin disease, which of course it is. But what they can’t see is that beyond the hives, the invisible symptoms of the disease can wreak havoc on your life.
Like feeling exhausted, for example. The reality is that around 90% of people with CSU lose sleep because of their condition, with 48% unable to even enjoy social activities as a result.1
Let’s face it. Sleep and CSU aren’t always friends. Symptoms in the evenings and overnight can cause you to be unable to fall asleep, or can result in frequent wake-up calls. And with a mountain of evidence that sleep is critical to your health and state of mind, this is can have a huge impact on your day-to-day life.
If feeling exhausted is something you struggle with, you’re definitely not alone. An online survey of people with CSU found that 55% experienced symptoms in the late evening or night that disrupted sleep up to four nights a week. But what does this mean for the time you’re awake? It can be debilitating.
One recent study found people with CSU had a greatly reduced quality of life thanks to challenging secondary symptoms such as fatigue2; another found that 46% of people with CSU felt like crying at least once a week through tiredness and frustration.1 So much for ‘it’s just a rash’.
Sleep deprivation can affect life on a practical level too, particularly when it comes to work. We now know for example that nearly a quarter of people with CSU miss work at least once a month due to their symptoms.1 And moreover, one study found that impaired sleep could reduce productivity by as much as 30%.3 What’s more, according to a Canadian study that was presented in 2015, work absenteeism and loss of productivity appear to increase with the severity of symptoms.4
Of course, it’s not just keeping up at work that can be a problem. When your symptoms get in the way of sleep, quality time with friends and family can suffer, too. Nearly three quarters of people living with CSU report having to miss out on social occasions because of their skin condition, while a recent report by Allergy UK, found 37% say the condition even restricts their sex life.1
The facts aren’t meant to depress you. They’re actually meant to empower you. Perhaps you’ve always wondered why you’re so tired? Now you know. Or maybe you knew you were tired because of your CSU, but didn’t have the resources to explain to your employer, friends, or family “why.” Now you do.
But what else can you do? Staying on top of your symptoms is key. Keep track of how much you’re sleeping, how you’re feeling when you wake up and what type of impact your sleep is having on your productivity and social life. If you notice things aren’t great, or they’re getting worse, it may be time to talk to your doctor about different treatment options.
Outside your phone and the doctor’s office, there’s still work to be done. And it all starts with communication. This isn’t easy for everyone – sometimes you just don’t want to talk about your CSU, and that’s OK. But for those who do, explain to the people around you why you’re so tired. Their assumptions of laziness or a lack of interest are just that – they’re assumptions. They have them because they don’t know any better. So help them learn.
And beyond everything else, cut yourself some slack while you’re at it. CSU is a challenging skin disease – if that means plenty of lie-ins and early nights then so be it. Be kind to yourself and you might just find everyone else will follow suit.
Wheals of Despair market research amongst 103 patients. November 2013-January 2014. Last accessed: 14.09.15. http://www.novartis.co.uk/downloads/90ten-novartis-wheals-of-despair-report-print-version-final-100614.pdf
Epidemiology, healthcare, resources, use and clinical features of different types of urticaria. Alergológica 2005. Ferrer M. J Investig Allergol Clin Immunol. 2009;19 Suppl 2:21-6. http://www.ncbi.nlm.nih.gov/pubmed/?term=19530414
Assessment of severity and quality of life in chronic urticaria. Jáuregui I, Ortiz de Frutos FJ, Ferrer M, Giménez-Arnau A, Sastre J, Bartra J, Labrador M, Silvestre JF, Valero A. J Investig Allergol Clin Immunol. 2014;24(2):80-6. http://www.ncbi.nlm.nih.gov/pubmed/24834770
ASSURE-CSU Canadian Results: Assessing the impact of chronic spontaneous/idiopathic urticarial on work productivity and indirect costs. Presented at ISPOR 20th Annual International Meeting, Philadelphia, USA, May 2015. Last accessed: 14.09.15. http://www.ispor.org/ScientificPresentationsDatabase/Presentation/56048. http://www.ispor.org/research_pdfs/49/pdffiles/PRS31.pdf