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I Have a Chronic Illness.


Chronic illness is tough. I should know, I have one. I’m not usually particularly open about my personal struggles, because they’re just that-personal. The world is a tough place, and I’m hesitant to share another sad story. But, I think it may be able to help a few people with chronic illnesses find their own career paths.

When I was 19, I was diagnosed with migraine disease. There’s a push to say “migraine disease” instead of “migraine”, because migraines are often equated to headaches. And headaches can just be wished away. Or banished with drinking enough water, right? Wrong.

A lot has happened since I was diagnosed with migraines. At one point, I was suffering from 4 migraines a week. Each migraine lasted at least 12 hours. My longest one was 72 hours. You read that write. Four migraines a week for at least 12 hours meant I was pretty much bedridden.

I am so happy to say that my migraines are largely in remission. Thanks to some incredible breakthroughs in medicine, I am down to 1-2 migraines a month. When I do get a migraine, I’m usually in severe pain for just a few hours.

I never knew if I was going to be free of pain. If the first migraine-specific medication didn’t come out in 2018, I wouldn’t be. I’m incredibly lucky with my chronic condition.

I was very lucky. Migraines are a complex disease. So, just because I’m not in pain, doesn’t mean I’m totally “normal”. There’s still quite a bit I can’t do. And some days I just feel terrible.

So what does all this have to do with writing?


The Limitations of Chronic Illness

Healthcare jobs can’t always make the types of accommodations people with chronic illnesses need. I couldn’t just ask to sit down during a long, busy 12-hour shift. And those blaring, bright fluorescent lights? I couldn’t ask that they be dimmed because I was sensitive to them.


There were other days I would just wake up in blinding pain. Completely unable to leave my bed. I would have to call out. I couldn’t even open my eyes to drive, let alone be responsible for dispensing medications that day.

Healthcare facilities hate callouts. And I get it, I really do. At the same time, they need to build a better buffer into their staffing ratios to accommodate for those scenarios. But they don’t. So calling out is different from calling out to an office setting.


Writing: The Alternative path

Luckily, healthcare workers aren’t just bedside workers. We can work remotely, too. If you have a chronic condition that leaves you bedridden, you have options. Or if you have a condition that makes you feel uncomfortable at work, you don’t have to stay there.

You don’t need to be the most disabled of the disabled to seek alternative work options. You deserve to be comfortable at your place of employment.


Remote

One of the biggest perks is working remotely. This means you don’t have to waste your limited energy getting ready, driving in, or completing other mundane tasks. You can focus on what you need to get done as a worker.

You don’t have to explain to that coworker why you’re squinting up at the lights today. Or why you forgot to put on makeup. You don’t have to explain to anyone why you’re having a “quiet” or “off” day. You can just exist and get your work done in peace. That’s what really matters.


Breaks

Having a chronic condition means you may need to take more breaks than the average person. That’s okay. When you’re home, you don’t have to explain to anyone why you’re sitting in silence for 20 minutes with your eyes closed. As a freelancer, you’re the boss. As long as you get the job done, communicate effectively, and attend your meetings, take all the breaks you need.


Doctor’s Appointments

I have to go to see my clinician at least once every 4 months, but usually it’s

sooner. And when I’m undergoing testing, I have to see different specialists. When I’m taking time for appointments and sick days for my migraines, it starts to add up. I never want to be seen as an unreliable employee, but I had to use the time off I had to manage my disease.

As my own boss, I know my schedule and I know my work ethic. I know I’m not just taking time off to watch netflix. I’m taking the time because I need it. I don’t have to provide notes, and I don’t have to explain to anyone why I’m not working that day.

I also don’t have to worry about counting my sick days. I can take as many as I want. I can also schedule my writing time around my doctor’s appointments. This means I can still be productive when my scheduled appointments are ramping up.


Modifiable Surroundings

The best part of working remotely: being able to modify your surroundings. Are you feeling nauseous? You can eat some crackers in bed while you research. Did your medication increase your temperature? You can turn a fan down or take a cold shower. You have that power. In an office setting, you need to listen to everyone else’s needs, too. At home, you just need to focus on yourself.


Summary

Writing from home as your own boss lets you balance your life how you need to. This may mean taking a day off and writing for longer the next day. Or you may need to take small, frequent breaks throughout the day. As your own boss, you can be in charge of your work environment and your health.


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