Chronic Illness

Call Me A Biohacker, Not A Sick Girl

When you're facing a lifetime of illness, sometimes, you've got to glamorize what you're going through not to feel stuck in the sick life.

“I don’t want to take any more drugs,” I say aloud and think about how Nancy Reagan would be super proud of my ‘just say no’ attitude.

I’m about to leave for yet another doctor’s appointment and I’ve been struggling lately. I live with Lupus and MS. My boyfriend has suggested I tell the doctor how much my latest symptom, fatigue, has interrupted my life. I’ve lost out on work, I’ve lost the ability to do my favorite activities—yoga, swimming, hiking, skiing, even walking for long periods—and I am in a total funk. While my MS has been stable and non-life altering for ten years, lupus has turned my world upside down. Even so, I don’t want to tell the doctor my struggles, because what can they really do? I’m sick, I think. Forever. The best they can offer is another drug and I don’t want to add another prescription to my smorgasbord.

Another pharmaceutical will only serve as a reminder that I am not well, a reminder that is already ever present. There is one drug that I will be on for the rest of my life, so long as it doesn’t damage my eyes. I will intermittently take the others as symptoms come and go. I wish with all my heart that I didn’t have to take any of these. Don’t get me wrong, I totally believe in medical science and am grateful that these compounds exist, but, like, I said, I am in a bad place. And that bad place has me wanting to break free from this life of chronic illness and feel like myself again—the self that wasn’t ill, and doesn’t have to take drugs.

I don’t want to tell the doctor my struggles, because what can they really do? I’m sick, I think. Forever.

At the appointment, my doctor asks me how I’m doing and since I don’t know how to lie to authority figures I tell her the truth. “Terrible.”

She asks a few more questions and as I describe how the fatigue has made me lose out on so much, I watch her face nod with understanding and I know exactly what’s coming.

“There’s a drug that a lot of my patients do really well on,” she says, and I hesitate. Because a) it’s more drugs and b) it’s more drugs.

Drugs have side effects. Drugs remind me that I’m not healthy.

“The side effects are pretty negligible,” she states as if she can read my mind. She then tells me that there is a high probability that if I try the drug a few times it might help me rise out of my funk and back to a state where I can write and workout like my old self again. “You don’t have to take it forever,” she says, and I reluctantly agree to let her prescribe the medicine. I figure a prescription can’t hurt. If, when I return home after the appointment and research the drug and its side effects and look up personal accounts of others who’ve taken the drug and decide not to take it, then no harm is done. I’ll simply place the little piece of paper in the recycling bin and move on with my life the best I can. Fatigued, hazed, and in pain.

However, when I sit down at my computer and type the drug name into the search bar, I discover something exciting—the drug is used by biohackers all over the world! People are taking it not to help with the fatigue caused by an autoimmune disease that is attacking their body, but to make them smarter, more productive, geniuses. Maybe this isn’t such a bad thing, I think.

I know all about the biohackers because my apartment sits smack dab in the middle of Silicon Beach. There’s an actual biohacking lab down the street where they claim you can get a full workout in fifteen minutes. They sell supplements and drinks and food that’s marketed to all the entrepreneurs and start-up prodigies who don’t have time to deal with the monotonies of real life because they are people who are trying to change the world one brilliant idea at a time.

Suddenly, having the prescription in hand no longer makes me feel like a pariah who’s been cast aside for her inability to live a normal life. Instead, I think, it provides the power to be someone who takes a drug to get ahead in life, not just to catch up. This I can deal with.

The first day I took the medication was a whirlwind. I revised two chapters of my next book, Kondo’d three closets, unpacked a suitcase that had been cast aside from a weekend trip taken three weeks ago, and danced around to Led Zeppelin. My boyfriend was shocked at the amount of energy I had and elated at the amount of joy I emitted. My sister in Chicago called that afternoon. “You sound happy today,” she said.

“Yes, I am. I’m on fire,” I replied then told her about my new prescription.

“Be careful,” she said, and I paused for a second. I knew what she meant. That if I used all my energy stores because I was buoyed by the drug, I might just crash hard the next day and my symptoms could be far worse.

“I will,” I promised and meant it. I didn’t want to go back to feeling the way I had the day prior or the months before that. I wanted to continue lifting myself out of the fog and to do that I’d have to pay close attention to how I felt in every moment. That is the balance that comes with living with chronic illness. You have to push yourself to keep moving, but you can’t push too hard. So, I take the drug as prescribed: as needed. I sometimes only take half a dose. I am on half a pill right now writing this.

That is the balance that comes with living with chronic illness. You have to push yourself to keep moving, but you can’t push too hard.

The tap-tap of my fingers on the keyboard brings a smile to my face. I might not be able to return to yoga or ten-mile walks on any sort of regular basis, but I feel alive. Which makes me wonder… If I was so low that this drug simply brought me back to myself, what are the biohackers experiencing? Enlightenment?

I don’t know, but good for them if they are. Because right now I’m feeling my own epiphany and that is this: when you’re facing a lifetime of illness, there is something that can be done. You might have to trick yourself into believing you’re taking a medication because all the cool kids are doing it, but if pretending you’re a biohacker gives you hope that you’re not stuck in the sick life, then I say go for it.