In Kindergarten, she was one of the fastest runners in her grade.
When she was seven, she would giggle, “My wrist popped.” An unusual statement, but not worthy of notice.
In middle school, when she repeatedly twisted her ankle, a specialist gave her orthotics. By high school, the injuries were inexplicable, as was the recovery. It was hard to tease out procrastination and teen messiness from real pain and exhaustion. And I was not always patient with my daughter.
In college, my daughter was diagnosed with Ehlers Danlos Syndrome (EDS) with joint hypermobility, which meant her joints would shift and dislocate on a whim, and even more frighteningly, she could often pop them back in place – yes, those wrist pops! But now, post-puberty, larger joints like her hips and shoulders were shifting involuntarily. I cried when the cane she ordered arrived, and cried some more because she was so happy to have one. She was 19, and it felt so real and so wrong. I was proud when she walked at both her college graduations with her cane, but my real understanding of a day, a week, a month with a disability, started when she moved back with us during the pandemic.
Christine Miserandino’s Spoon Theory asks you to imagine having 12 spoons given to you each day, and relinquishing a spoon for every activity in your day. If brushing teeth, putting on shoes, and getting into your car every morning takes up 3 spoons, you’re already done with a quarter of your energy for the day by 8 am! And that’s assuming tying your shoelaces only took one spoon – it could cost you 2 spoons if your wrist hurts. Now you have to stretch out the remaining 8-9 spoons until bedtime! In contrast, healthy young people start their day with unlimited spoons and endless capacity to do things! My daughter took me on a Mother’s Day hike once and we had a great day. No cane, no pain, just a girl who packed a fancy picnic for her Amma. But she probably used up all her spoons for the day and borrowed a few from the next, which meant she was mostly immobile the next day.
And that’s the physical toll. The emotional impact holds every feeling imaginable – grief over the loss of control of one’s body, anger that you are 20-something and cannot do the things people take for granted, fear that your once-flighty feet cannot race you to safety, the uncertainty that you will find a life partner who will accept you, braces and all, embarrassment that you look young and vibrant but have to ask for help.
Disability awareness is more than leaving the Handicap parking spot open or holding a door for someone in a wheelchair. Here are some ways to support someone who appears to have a disability.
Don’t ask, “What’s wrong with your leg?” or worse, “What’s wrong with you?”
Do validate! Even in the medical community, it is hard to get validation in the early stages of a diagnosis. One physician advised my daughter to run and bike more (worst advice ever!), another suggested Tylenol and Motrin with the offer to check her kidneys and liver in three months, and another simply said, “Well, the x-rays show nothing.” When she finally met a doctor who understood her EDS, she cried. People with chronic conditions may put on a happy front because they do not want to be seen as complainers. Acknowledge their pain and that their condition is real.
Stop offering solutions unless you are an expert in the field (and even then, only if solicited). Remember, the person has probably done their research and visited a dozen specialists already. Jumping in with “Have you tried yoga/ayurveda/homeopathy” or “You should go to Kerala” requires an already fatigued person to explain and defend.
Don’t stop asking them to do things with you. One of the accompaniments of chronic pain is loneliness. A person in pain might turn down events on bad pain days and it is hard for friends to remember to extend the invitation the next time for fear of bothering the person or not wanting to hear another ‘no.’ Ask and accept the response with no judgment.
Do investigate accessibility when you extend an invitation. My daughter is grateful to her friends who invite her and tell her about the location so she can prepare.
Don’t offer encouragement without context. “I’m sure you’ll be fine tomorrow” or “Wow, your braces are off today!” is well-intentioned, but to a chronic sufferer, it means little and the person is probably too tired to tell you otherwise.
Do say yes to requests, as often as you can, because asking for help is hard. If you are the one offering, be specific, if possible, in the help you offer (carrying books to the car or loading a dish). The well-meaning “let me know if you need help” requires some effort and planning from someone who is fatigued.
The hardest thing about a mostly invisible condition like EDS is that, on a good day, you’d never know anything was amiss. Sometimes I can’t resist the urge to say, “If you can bake fancy cupcakes, you can pick up your clothes off the floor.” And then I realize that life would be a big drag if all the good days were spent on chores. So give me a cupcake, kid, and let’s live in the moment and have the best day!
Gayatri Subramaniam is a Licensed Marriage and Family Therapist who works with gifted teens and young adults. She has raised two children to adulthood with ease but is engaged in an ongoing struggle to teach her kitten, Poppy, to be a responsible, thoughtful cat!