Last week, Lady Gaga made international headlines by canceling the remainder of her tour dates for a second time, due to her debilitating fibromyalgia. Moved to send love to Mother Monster, hundreds of thousands of fans began tweeting their understanding and good wishes. Soon, #GetWellSoonGaga was trending. Being a sometime dweller of the Twittersphere myself, I tweeted:
My heart breaks for Gaga, but if I emotionally detach myself, I’m glad this is happening on a public platform to show people that, even with access to the best doctors and with money as no object, #fibromyalgia is real, debilitating and mystifying. Stay strong Queen!
To observe that “Get Well Soon” isn’t the most sensitive of greetings is not to cast any aspersions on those who use it. After all, we are taught and socialized from a young age to believe that, when someone is ill, this is the customary polite wish.But for those of us with chronic illnesses, this seemingly innocuous phrase can splinter our heartbreak into yet more shards. To accept that modern medicine, that so-called matchless savior, cannot restore you, is a grieving process. It takes time, tears and often therapy to get to a point where you can accept that for you, “pain-killers” do not exist. Some of us walk this road alone and unaided, and that is how we will travel for the foreseeable future.
As such, cheerily greeting a chronically ill person with “get well soon” is tantamount to chivvying a recently bereaved widow to “cheer up, love.” It is not appropriate. It is an empty wish. We cannot enact this wished-for change. Perhaps most damagingly, it can be perceived as an order to stop being miserable because it’s disrupting everyone else’s day. Spoonies regularly carry so much guilt that they can’t stand to be made to feel like any more of a burden.In order for “Get Well Soon” to translate to anything intelligible for a spoonie, the phrase would have to undergo a complete translation. One must redefine “get”: wellness is not a commodity we can pick up like a jar of peanut butter, nor can we earn it through good deeds or suffering (believe us, if it came through suffering, we’d be the most well people on the planet!). One must redefine “well”: we may never be “well” again, if by “well” you mean fit and healthy/able to regulate our pelvic floor/tie our own shoelaces/walk without fainting/grow a new colon, etc. One must redefine “soon”: a spoonie’s timescale is slippery. The distraction of concentrating on a potential cure can result in years speeding past without our knowledge, like underage teenagers sneaking into a club while the bouncers have their backs turned. Time cruelly evades our control with vicious constancy. As well-intentioned as “Get Well Soon” is, unless you can personally take responsibility for the rapid progress of medicine, you might as well wish that a chronically ill person “Halpanoony Eggcaffle Winch.” It just doesn’t. Make. Sense.Of course, for the grand majority of people, I maintain that this is an issue of education and not of malice. What can we offer in the face of the knowledge that a loved one feels poorly? We don’t want them feeling that way for long, and we want them to know it – what else do we say? I took some time to compile a list of all the things I would rather someone said to me when I was in a terrible pain flare, or admitted to hospital with a complication from the same tyrannous disease.Alternative Wishes to “Get Well Soon”
- Rest wellGentle hugsMore good daysPeace to youStrength in hope/hope and strengthThis too shall passHope you feel AWAP soon (big up Chronic Babe Jenni Grover for this useful acronym: “As Well As Possible”)May your joy be restored quicklyMay your spoons replenish quickly/wishing you spoons (I love it when my non-spoonie friends say this!)
- Power to your doctors/caregiversMore life (shout out Angels in America reference!)You are more than your illnessI see youYou matter to meYou are so lovedTake your timeMy shoulder is always yours to cry onI’m going to leave my phone on /I’m here whenever you need meI’m not going anywhereYou are not aloneI vow to punch the next person who tells you to “keep smiling”You are enough
N.B. I’ve omitted “praying for you” on purpose, just as I have omitted “sending good vibes.” Personally, I like to be on the receiving end of both of these things, but I know not everyone feels that way. Secondly, sometimes we want to send wishes to someone we don’t know very well – given that it is them you would like to bless with your good feeling, I am of the opinion that you should respect their stance and prioritize this above your own. I would no more tell Richard Dawkins I was “praying for him” than I would tell Stephen Hawking I was “sending good vibes,” as it would bring no comfort (even if this were true on both counts). Moreover, it is with sadness that I have noted the “sending” of prayers and vibes can all too often be a way of absolving oneself of any further responsibility. So, I’m not saying you shouldn’t send prayers or vibes as your spirit leads you, but I implore you to a) be guided by what will comfort your friend, not you, and b) make sure that you really mean it, that you’re not using it as a front. And if you can “send” those “good vibes” by bringing round a casserole or doing an hour of vacuuming for them, then so much the better. Actions really do speak louder than words.And so to Lady Gaga, Mother Monster, whose battle is so public and whose struggle is so stark, I send love and light. We stand with you, Gaga, and we will keep holding out hope. Your body is home to a radiant soul. Shine on, Queen! You take as long as you need.