When deciding to return to work be it full or part time, one of the greatest challenges for a person with autoimmune / connective tissue disorders is to find a job that will fit our rock n’ roll lifestyles. I say this tongue in cheek, but also as a metaphor, as it doesn’t seem to matter how healthy we are–if we overdo it, we’re probably going to wake up the next morning feeling like we spent the night trying to outpace Ozzy Osborne circa 1980. And let’s face it, much of the healthy world understands and sympathizes with the behaviors that result from our health just about as well as they do Ozzy’s drinking and drugging.
We are rock n’ roll because our bodies are unpredictable, therefore so are we. Most of the world won’t bother to even try to understand why we do what we do and frankly it’s why employers who expect us to punch a time clock hate us. We might come in late because despite going to bed at 10pm like good little boys and girls our pain levels or insomnia wouldn’t let us actually sleep until 4am. Or we subluxated a shoulder getting dressed. We miss time because of migraines or injury or catching the latest bug, medical appointments and other things completely out of our control just like everyone else, just a lot more frequently. In the grand scheme of things, the reasons behind those behaviors matter not. In the end, we are seen as rock ‘n roll; too cool to hold a day job.
More than likely, we’ve all been there at least once before. Terminated because our FMLA ran out, or we missed too much time, or got fired for a fill-in-the-blank excuse used to get us out the door before we cost the company another dime in insurance costs and time lost. It’s demeaning and has taken nearly as long to recover from as it took to get diagnosed…..well, alright, maybe not THAT LONG, but we don’t particularly want to travel that road again anytime soon. So what do we do?
In today’s job market, there are a surprising number of ways to make a living that don’t require you to punch a time clock and have nothing to do with MLM or pyramid schemes, regardless of ability or education level. It’s also becoming more and more possible to make a living working from home, though these positions usually require specific time commitments and hours, so you want to consider how much flexibility you will need before deciding where to apply.
However, it does take away the added burden on energy stores of having to wash, dress and prepare for work, drive there and back (or deal with public transportation) and the often long haul to and from the parking lot, lunches, bathrooms and so forth. It may not sound like much to a healthy person with boundless energy stores, but for a person with chronic illness and fatigue, even if you have a “cushy” desk job, those activities can be the difference between having the energy to fix dinner or get in those few minutes of precious cardio and physical therapy everyday that keep us from completely falling apart,
First, it’s important to decide what kind of job will best suit your needs and goals. Begin by making a list of what your ideal job would look like. I will share mine below:
Job Goals and Needs
- Bring in $400-600 month
- A job with social interaction
- A job with writing
- Will help me build confidence
- Will help me get used to being in public again
- something where I control my hours, so I can keep from getting run down, but build up as I get stronger
- flexibility to come and go as needed or work from home
- 10-15 hours to start
- Low activity levels (sitting)
- Ability to move around and take breaks as needed
- Take time off as needed
Remember, this is a list of needs, not wants. It needs to be grounded in practicality. If I had my way, I’d take a full time job teaching or writing. Those are the things I love to do most in the world and like most people, I thoroughly enjoy being productive, developing in a career and contributing significantly to my family’s well-being. But the reality is that I’m not ready for the rigors of a full-time job, especially not one as rigorous and demanding as teaching. Instead, I’ll settle for contributing to the high costs of my own healthcare and paying down some of the debt we’ve accumulated when my SSDI and my husband’s paychecks haven’t quite covered monthly expenses while having the satisfaction of knowing I’ve done everything I can to contribute. I’m also really looking forward to getting out there and expanding my world beyond these four walls, be it literal or figurative.
Still, I need a job where the boss isn’t going to freak out every time I have a migraine and can’t get it under control or go into a flare. I need to be able to go to my medical appointments without having to negotiate with other people’s schedules. It’s hard enough to get in to see some of my specialists. I need to be able to read my symptoms and say “work just isn’t going to happen today” and know that I still have the power to prioritize my health over the needs of the business, which really isn’t going to suffer nearly as much as I am if I push myself past that magical threshold that’s the difference between being able to recover in a day versus a week.
Of course, all of these ideas and decisions are something you need to decide for yourself. If you don’t have dysautonomia such as POTS or NMH, then maybe you don’t have to worry about exercise intolerance and working a regular schedule won’t be a problem for you. Maybe you’re simply at a higher level of functioning and you know you can work about 30 hours a week with no problem. Set those parameters and do your best to stick to them. More than likely, as you’re going about the process of job hunting and interviewing, you’re going to figure out if you can really handle the number of hours you’ve chosen. (Remember, you have to leave room for the rest of your life, unless you can actually afford to hire people to do some of that for you). Once you start entertaining job offers, if the job is nearly perfect except for a couple of minor points, see if you can negotiate the remaining points as part of special accommodation due to disability. Pursue what you want and do your best to make it happen. That’s what the ticket to work program and trial work period are all about.
If you’re in a similar boat to me and are only interested in doing something part-time or even full-time with total control and flexibility, you might want to consider doing something where you are your own boss, or even starting your own business. There are plenty of low investment options out there, such as driving for Uber or Lyft, providing a service such as cleaning, dog walking or running errands. You can drive for Uber or Lyft and have complete control over your hours, but you may also be able to find other operations that specialize in providing transportation to the elderly, young and disabled in your city, as well.
If you’re interested in working for yourself, consider monetizing your hobby or special skill. There’s a lot of money to be made through merchant sites like etsy or setting up a storefront on Amazon. If you’re a blogger, monetization is an option and one I’m currently exploring. Of course businesses take time to build and usually require some initial investment, so working for someone else in the meantime could help you accomplish this goal.
There are also things like task rabbit and where you can perform small tasks for companies and individuals for a prearranged price, though if you read reviews of these services many people complain about being fairly compensated, so be forewarned.
Working from home is very possible if you have good customer service skills or a college degree. You can do call center work (everything from appointment setting to technical support), tutor students, teach online classes, write content for websites, blogs, newspapers and more. You just need to know where to look, which will be the topic of my next employment related blog.
If you’re disabled and want to work, there are plenty of options these days, even if you’re on SSI or SSDI. Of course you want to work with a WIPA to ensure you’re doing the best thing for your situation (see my article on the subject here), but if you’re healthy enough to find yourself regularly suffering boredom, it’s probably time to start turning some of your time into revenue! Even if you don’t make the world’s most reliable employee that doesn’t mean you don’t have value. It simply means you need a non-traditional approach to earning. In today’s job market, it’s quite possible to put some money in your pocket and protect your health.