By Jenn Lee
Become old at age twenty-five.
At twenty-five, through a series of conversations with your not-yet husband where you unpack facts from a clown car, it dawns on you that most people your age do not live in constant pain. The light in the center ring switches on for you when he claims that he does not wake up in agony. Obviously, he’s lying. Your body started complaining upon waking at age fourteen. That’s normal. That happens to everyone. Pain is a fact of life. After more than a decade of around-the-clock pain, you think you would notice if it were a weird thing to be experiencing.
Apparently you are wrong about the noticing thing.
What do you do now? You’re twenty-five and you’ve only just understood that your body has been behaving very badly for the last eleven years. You make an appointment with your doctor and freak out. Not necessarily in that order. Make lists like unending rainbow silks of everything your body does that you now know it shouldn’t be doing. Scour the internet for symptoms that match yours. At night, stare up at the darkened ceiling while your brain runs through every possible nightmare scenario. What if it’s cancer that somehow escaped notice for over a decade? Can cancer do that? Multiple sclerosis can. Is it MS? A lot of your symptoms overlap with lupus; there’s always lupus.
Shockingly enough, not sleeping is not helpful.
Turns out, you are a lucky girl on multiple levels. First, it only takes four separate, hoop-jumping doctor appointments and a handful of highly invasive and occasionally humiliating tests to get your full diagnosis. One of the women from your online support group is fighting through her ninth year without an official diagnosis. How do you live for nine years knowing that something is seriously wrong, but no one has any idea what it is? You barely survived four months of that mess. Secondly, no part of your diagnosis is particularly scary: fibromyalgia, degenerative disc disease, psoriatic arthritis. Learn to juggle painkillers and heating pads and muscle relaxants while blindfolded to combat the host of other comorbidities that rear up from time to time. That’s what doctors call it when you have more than one chronic condition. Comorbidity. Adorable, right? Despite the term, nothing you have will kill you.
Nothing you have will ever go away, either.
Explaining chronic conditions to family and loved ones is actually explaining and then re-explaining and then re-re-explaining. It is taming lions and tigers who have the memories of goldfish. Accepting the truth of being chronically hurting yourself is tricky and ongoing. You will always be in pain. How do you sum that up for Grandma? These are the people that love you, and they don’t want to watch you swallow that sword.
“But you have good days, right? When was your last good day? Shouldn’t you focus on that? When was the last time you were pain free?”
You don’t know. You think you were probably in your early teens, but you cannot actually remember a day where you woke up and didn’t hurt. You hope it was fourteen, but when you try to do the math it looks closer to about eleven. An old gym teacher, Mrs. Taber, barked that you couldn’t possibly hurt just from stretching out before playing dodgeball. You are a kid and made of rubber. Mrs. Taber taught you in third grade.
You are the incredible breakable girl. You have always been the incredible breakable girl.
When you’re first diagnosed, everyone is super supportive. They zero in on the positives. “They might find a cure!” No, that’s not going to happen, but okay, sure, they might. “You could go into remission!” Technically, yes, also possible. More likely than a cure. Are you going to put off doing everything, put off living until that hypothetical day when remission descends from on high? Better luck diving into a drinking glass of water from one hundred feet up. “Maybe they misdiagnosed you!” What do you say to that? Yes, you hope you have to go take all of those incredibly painful and invasive tests again and marinate in stress for several months to several years before receiving a diagnosis that might be worse than the one you currently have? You’d rather stick your head between a tiger’s jaws.
While your loved ones are trying to come to terms with this awful thing, you yourself are still trying to accept a whole host of new realities. There is a learning curve here. There are things you love that you will never experience again. You didn’t realize that the last time you experienced it was the last time you would ever experience it. Attention was not paid. Now you’re sitting on your couch in your pajamas, panning through memories looking for one more nugget that you can shine up and turn over and over in your head for the rest of your life, hoping to see it catch the light in a new way. You try to repackage your old tricks into a new act. Your conversations grow heavy with “used to’s.” You used to play sports. You used to love road trips. You used to dance, even if it was alone in your kitchen. You used to go to concerts. You used to dress up, wear high heels and chunky necklaces. You used to be able to flop down on your belly with a big book, and you used to let hours pass in that position.
You have suffered a loss. You need time to grieve. You need time to realize that you need time to grieve.
The good news is that everyone’s life is a balancing act, lived on the highwire. Yours is just less forgiving earlier on. When you are actually as old as your body currently feels, you will have had decades of checking your balance and adjusting your footing. You will have learned how to fall. You will know how to keep your chin up and your shoulders thrown back, hips square to the wire. You will run circles around your newly old friends who don’t have all of your tricks and workarounds. You will amaze and astound.
Then you will gently guide your newly old friends and teach them what you know. Because you are a fucking goddess.
Sami Jankins holds an MFA in Screenwriting from UC-Riverside at Palm Desert and is the founder of The Tiny Tim Literary Review. Previously she was a dating advice columnist for The Good Men Project’s column - Dating in the Digital Age with Sami Jankins as well as the press and social media editor for The Coachella Review. She wrote a blog for a number of years called Chronicles of Cheerful Clotter for HemAware Magazine, where she detailed her life with chronic health conditions. Sami is also an associate producer and press manager for the documentary Invisible: The Film, which focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a Senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, National Pain Report, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.