How Dr. Seuss' Description of 'Purple Days' Perfectly Explains Chronic Illness

I’ve been reading the book “My Many Colored Days” by Dr. Seuss with my kindergarten music classes this week for a lesson. In this classic children’s tale, Dr. Seuss uses colors and illustrations to help children connect to their different emotional states at different times. I love this lesson and the children really connect to it and in later years I can use the analogy of colors to help students describe the kind of day they are having.

• What is Fibromyalgia?
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Whenever I get to the “purple day” text (which must be read with the ultimate of drama for Kindergarten students) I’m always struck by the verbiage Dr. Seuss used to describe “purple days” and how purple was the color used to represent both lupus and fibromyalgia. “On purple days I’m sad, I groan, I drag my tail, I walk alone,” wrote Dr. Seuss.

When you live with chronic illnesses like fibromyalgia and lupus there are many, many days where this is a perfect sentence to describe your feelings. Everything hurts. You are too tired and sore to even shower, yet can’t stand the fact that you aren’t clean. Putting on clothing can be a two-person job — that’s if you can get out of bed. Just the feeling of the fabric touching skin can be so painful that it limits what you can and can’t wear. Zippers, buttons, necklaces, bracelets — forget it if your fine motor coordination isn’t working.

You can feel super nauseated but you have to eat something because there is that handful of pills waiting for you to ingest and you’ll only feel worse (or get really sick) if you don’t take them. If you’re one of the ones who is still well enough to be able to hold down a job you make your way there, wishing you had the “sick time” to take off but knowing that one cold that turns into bronchitis then pneumonia can mean a week in the hospital then at least a month or two home recovering so you can’t stay home just because every fiber of your being hurts and you feel like you haven’t slept for a week. We just call those days Tuesdays. And on Wednesday we wear pink (no wait — that’s “Mean Girls” — but I digress)

Then there’s the loneliness. There’s a sadness and loneliness that comes with chronic illnesses like lupus and fibromyalgia. Let’s say you make it to work (because you’re one of the ones that can still work and not one of the many who are too ill to hold down full time employment). Many days it’s just too exhausting or painful to walk down to the lunch room/break room. Does anyone notice? Truth is that most people are so wrapped up in their day-to-day routines that as long as you have a smile on your face and don’t complain they don’t really notice whether you were there or not.

For the person who misses everything because of illness, we are keenly aware of how much we miss. Every party, every “girl’s night out” every birthday, every dinner — we are reminded of what we’ve lost to disease. While we eat our lunch at our desk alone, that feeling of being separated from the group because of illness is intensified. When we are forced to go rest during a gathering at our own house because the fatigue just hits too hard right then, there is an acute embarrassment and shame even when it’s your closest friends and family. Because, you see, for the rest of the healthy world, life goes on, but for us, illness has forced us into periods of mandatory isolation, separated from the rest of the world not by anything we’ve done but because of some happenstance of our DNA.

Society has systems in place to isolate those as a form of punishment when you break rules we have deemed as severe. We use the threat of prison to keep people whose moral compass may be a bit off kilter on the up-and-up. Yet, chronic illnesses like lupus and fibromyalgia often force the sufferer into a “prison,” yet they have committed no crime. We are left on the sidelines watching the world go on through the window of social media while we are in rest and recovery mode. We plaster a smile on our faces as we hear about the “amazing time” we missed that “ you would have loved.” And we feel more alone.

I really try my best to focus on the positive. Those of you who have read my other posts and know me in real life can attest that I strive to not let lupus (or the myriad of other “party favors” like fibromyalgia that have accompanied it) define me. Despite lupus I refuse to see each day as automatically “purple.” I have many coping strategies to help myself get into a better, more positive mindset when I start feeling too “purple” (another article on that will be upcoming!) but I promised myself that this month, this Lupus Awareness Month I wasn’t “sugar coating” things. This Lupus Awareness Month I’m being as transparent as I am able to be at this point. And the reality is that purple is indeed the perfect color for lupus and fibromyalgia awareness and if you want to know why, just look at Dr. Seuss’ description of a “purple day.”