As a spoonie, the normal duties of work or school can become incredibly overwhelming. Depending on the severity of your condition, as well as the treatments you’re looking at, you may need to receive accommodations, reduce your hours/course load, work from home, or quit entirely. When you’re spending all of your spoons trying to survive, it can be hard to follow the script of “go to school, get a job, and work 40 hours a week until retirement”—and that’s absolutely okay.
Most of the world considers school and work to be the bare minimum of a worthwhile life, which is somewhat flawed; it doesn’t make space for folks with special needs or disabilities. Nevertheless, you’ll likely meet people who fault you for deciding to prioritize your health, and you’ll probably spend a good time being angry at or disappointed in yourself for not being able to meet that standard. In those times, just remember that this is only a cultural script—you can have a full, productive, and fulfilling life even if you step outside the standard pattern. Caring for your health and well-being is of the most importance.
School
If you’re struggling in school, be sure to first reach out to your teachers or professors. There may be things they can do to help you or accommodate you so you can continue attending. If you’re in college, be sure to get connected with your school’s academic services or counseling center, which is meant to aid students who need special help. They may be able to provide note-takers for you, get you extended time on exams, and help you work around any other limitations you run into.
Work
Since your job is probably your only source of income, the stakes of being a spoonie are much higher. However, there are plenty of resources out there, so be sure to seek those out as you find yourself in need. Here are a few starting points for those of you in the US (other readers are likely to find similar or better opportunities in their home country):
- The Americans with Disabilities Act (ADA): Among many other things, this requires companies to provide reasonable accommodation for employees in need, and not discriminate based on disability.
- The Family Medical Leave Act (FMLA): If you qualify for this, it will allow you to take up to 12 weeks off from your job (continuously or intermittently) within the space of a year without putting your job at risk.
- Social Security Disability Insurance: Those who have worked a certain amount of time and have paid enough in Social Security taxes are eligible for disability payments.
- Supplemental Security Income (SSI): If you aren’t eligible for Social Security Disability insurance, this is another publicly-funded program that can help provide income.
- Private disability insurance: You may also receive disability insurance through your employer. Unlike the public disability options above, which only provide the bare minimum (or less) needed to survive, private disability insurance may allow you to keep the salary or a percent of the salary you are at when you stop working.
This post was excerpted from the informational zine Chronically Badass.
About the Author:
Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass).