by Jennifer Crystal
A few months ago, someone told me that my life has a lot of restrictions.
From a certain perspective, this statement seems true. To thrive in the context of chronic tick-borne illness, rather than to merely survive it, I do have to adhere to certain rules that probably seem restrictive to the average healthy person. Before I got sick, I no doubt would have thought such a schedule was restrictive, too.
What exactly are these “restrictions”? I need to nap for a couple hours every afternoon. I need to make sure I’m in bed around 10:00 p.m. I don’t eat gluten or processed sugar, and I don’t drink alcohol or caffeine. I pace myself physically, planning out travel and exercise so I can enjoy activities rather than become depleted by them. I avoid over-stimulating events like concerts and fireworks that can rile up my otherwise controlled neurological symptoms. I don’t watch Game of Thrones.
These parameters are what allow me to function. It’s taken time, reassurance, and a perspective shift to recognize these boundaries are ensuring my health. In order to do a lot, I’m stinting myself a little. Without these “restrictions” in place, I would quite simply relapse.
Though I have generally accepted the limits or parameters on my life, sometimes I still do get frustrated by them. I’d prefer not to have to cut an afternoon or an evening short because I have to sleep. I don’t like missing out on things. I don’t want my needs to hold anyone else back, and I try not to let them (“You guys stay out; I’ll take a Lyft home.” “I’ll ski with you in the morning; you stay for the afternoon while I nap.” “I’ll drive separately to the party, so you won’t have to leave early when I do”).
Because I make these efforts, it hurt when someone told me that my life has too many restrictions.
It also gave me pause. I realized restrictions was not a word I had ever used before. I had often used the word “limitations”. When giving a quick overview of my decades-long struggle through misdiagnosis, diagnosis, treatment, relapse, and remission, I have said, “It was really bad for a lot of years. Luckily I’m much better now, though I do still have certain limitations.”
Limitations seems not as negative as “restrictions”, but it’s hardly positive, either. Using it gives other people permission to see my life as limited, when in fact I want them to appreciate the truer glass-half-full version of me.
I don’t have restrictions. I have needs.
Sure, my needs are different from those of others. But the fact is, everyone has needs. Introverts, for instance, need time alone. Extroverts need to recharge with others. Shift workers need to sleep during the day. These are simply things people need to do to live their best lives. To be the best version of themselves.
Sometimes that means putting other people’s needs first, to make sure they’re taken care of, too. Parents need to take time off work when their child is sick. They need to leave a dinner party earlier than they might otherwise have, so they can get their child to bed.
What matters is not what these boundaries of life are, but how they are viewed. Should we bemoan all that we can’t do? Or should we appreciate all that we can do? I could say, I can’t work a 9-5 job and I can’t celebrate the New Year at midnight, and I can’t go to a Dave Matthews concert anymore. Or I could say, by not doing those things, I can work part-time. I can write. I can avoid brain fog. I can exercise. I can visit friends.
There was a time, when I was completely bedridden, when I couldn’t do anything. I know how lucky I am to have gotten as well as I have. Some Lyme patients are paralyzed. Some have schizophrenia. Other people have cancer and have to endure chemotherapy. There are veterans who suffer PTSD and limb amputation, people who have traumatic brain injuries and strokes and terminal diagnoses.
Even those people can choose how they view their restrictions. Take Jean Dominique Bauby, the former editor of French Elle magazine who suffered a stroke that left him with “locked-in syndrome”. His cognitive function was fine, but the only part of his body he could move was his left eyelid.
So what did he do? He figured out a communication system whereby he blinked letters to a scribe. It was a painstakingly slow process—it took him two minutes to blink out one word—and yet he managed to write an entire book, The Diving Bell and the Butterfly. Instead of being weighed down by his situation, Bauby found a way to shine his light out into the world.
He inspires me to see my own limitations in a new light. When I looked up restrictions in Roget’s Thesaurus, I found a long list of negative words, but in the middle of it, in capital letters, was the word CARE.
To honor your needs is to care for yourself, to free yourself from victimhood and, instead, turn yourself into a victor, a Lyme warrior. To honor your needs is to see yourself as chronically awesome rather than chronically ill.
If someone else can’t see the beauty of that reframing, that shortsightedness is their restriction, not yours.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.