Lupus and Work: What are your options?

Another Day In Cubicle Paradise

Another Day In Cubicle Paradise (Photo credit: Wikipedia)

The SLE Lupus Foundation had a great article in their “About Lupus” advice column about juggling the demands of a job while juggling the demands of lupus. In an age where the typical work week can exceed 60 hours and technology has made us all accessible 24/7, it can be hard to get the rest needed to manage lupus symptoms and stress. However, with rising health care costs and stubbornly high unemployment rates, it’s also easy for people with lupus to feel pressured to work themselves into unhealthy situations in order to keep their jobs.

On the other hand, there are also more options for employment than ever before. From telecommuting to work share options, a traditional 9-to-5 position no longer has to be the only way to support yourself. Every style of employment has its benefits and challenges. Finding (or creating) a career that not only pays the bills, but also fits your lifestyle is as important an element to your health, as taking your medications and eating well.

Should You Stay?

While perks such as a guaranteed income for the year (hopefully) and health benefits might seem like good enough reasons to stick with the tried-and-true, there are other benefits to working a typical 9-to-5 job. Though you might feel as if you’re carrying the weight of your entire department or company, details such as your taxes, marketing, benefits, general bookkeeping and other duties are less likely to be heaped on your job description. A self-employed worker or entrepreneur wears all the hats of a company, from making the morning coffee to managing staff, doing all the advertising, paying taxes and handing payroll – as well as performing the actual services in the first place. There is something to be said for a position where the work is given to you, instead of one where you chase the work as well as the pay.

Traditional workers may also have more legal recourse to fight discrimination and corruption. The Freelancer’s Union recently launched a nation-wide campaign to get legislation passed that would give freelancers the legal backing to collect their wages from deadbeat clients. Yes, it’s sad, but true – the self-employed have to fight for the right to get paid for their work. For traditional employees, departments such as Human Resources and well-established labor unions are stationed to help when a simple conversation with your boss doesn’t.

And we can’t forget your co-workers, can we? Yes, there are plenty of fellow cubicle-dwellers who might make working from your house seem a like sweet dream, but plugging away alone all day, every day can and does cause problems for freelancers. Weight gain,and depression are just a few of the potential pitfalls that can affect your work if left unchecked. Traditional employment offers a consistent level of social interaction.

Other Options

If you’re not keen on the idea of striking out on your own, but your current employment is hurting your health, there are other options worth exploring.

Work-share and/ or Flexible Hours

A work share situation is when an employer will cut their employees’ hours instead of laying them off. It can also translate as splitting one full-time position between two workers. Flexible Hours is a situation where, as long as a certain weekly (or monthly) hourly quota is met, the hours can be worked and tallied in various ways. For example, you can complete a 45 hour quota for the week, by doing 40 hours from home at 3am and only 5 hours at the office. Both of these options can be good alternatives for workers who need a little more flexibility in their schedules, but be warned – the trade-off for this flexibility could be a pay-cut or loss of benefits. Your state’s Department of Labor is a good starting point to see what your state’s laws are regarding your benefits in these situations. Then, try talking to your company’s HR department to see if they already have an option like that available.


Make technology work for you. If the bulk of your duties can be done from any place with a screen and internet connection, you can try working out a work-from-home arraignment with your company. This is a good option if you don’t need to be in the office and you have a long commute – or if even one day working from home will let your body recharge the way it needs too. If you’re pitching the idea to your boss, be sure to do your research and point out the perks that your boss will enjoy as well; for example, if working from home will save the company money and allow you to work more hours, then bring those points up. Ask for a trial period to road-test the new set-up and show your boss that you can still kick some ass from the comfort of home.

Americans With Disabilities Act

And if the idea of bringing up your lupus (or any other chronic illness) makes you nervous, make yourself familiar with the Americans With Disabilities Act. Under this law, your employer cannot fire you on the basis of your disease and must allow reasonable accommodations for you if you need them. The sticking point with laws such as these however, is providing solid proof of discrimination, so be forewarned and arm yourself with as much information and as many resources as necessary if you need to fight to stay in your current position.

Should You Go?

On the other hand, there are strong perks to working for yourself. This was the path I found myself on when, in 2007, my kidneys were nearly decimated by lupus and I had to undergo 18 months of cytoxan therapy to save what was left of them. Recovering from the flare, as well as the harsh side-effects of the treatments took another few years. Though I’ve worked hard to regain a certain level of functionality, I still need be proactive in checking in with my doctors, and keeping my schedule sensible enough to limit further harm to my health. Not able to find that flexibility with a traditional job, I started out on the path of a freelancer.


Self-employment is a term that can be misleading. Yes, you do work for yourself, but you also work for a variety of clients instead of a single supervisor or boss. However, the alluring part is that you often get to choose who you current “boss” will be and have the power to walk away if the job doesn’t turn out to be what you expected.

Freedom is mostly what people imagine comes with the title “freelancer” – freedom to work from home, work the hours you choose, with the clients you choose to. It can be heady stuff, having those options, but don’t be fooled into thinking that working for yourself is easy. The flip side includes, being stuck alone in the house (or having to work around children or a spouse) for days on end, having to market yourself to attract clients, negotiating acceptable wages and terms and then, often chasing late payments. Many freelancers experience “feast or famine” cycles and have to budget their savings accordingly. Freelancers are also on the hook for their own taxes and their tax laws differ from those who are traditionally employed.

Don’t expect to make millions freelancing either. Between mill sites where freelancers try to outbid each other in a race to do the most work for the smallest paycheck and a lot of misinformation regarding what many freelance services are actually worth (I’ve seen ads offering $10-$20 for well-researched, original articles that would probably take several hours of work – would you work for $3 an hour?), don’t expect a huge payday anytime soon. And with the rates of un-and-under-emplyoment still high, the competition is fiercer than ever.

That said, working for yourself can give you opportunities that your average cubicle dweller might not have. One of my favorite perks has been the ability to expand on my skills in ways I would never have time for in a traditional job. By essentially being my own business, I now have some experience in marketing, advertising and have honed my time-management skills to a pretty fine point. I also have the time and opportunity to expand my skills even more by branching out into new services – for example, even if the only writing you’ve ever done is for technical manuals, you can still try your hand at writing for tech magazines if you’re looking to branch out. Or, try consulting companies on how to streamline their technical information so that their employees can better access it. You can even break completely new ground by doing some volunteering on the side to learn completely new skills.

And having control over your career also means having the ability to change it. Keeping a 9-to-5 position engaging or interesting (or at least tolerable) can be harder when you feel as if there are no other options, but as a freelancer, you are free to take risks, chase the big clients, expand your services or completely re-envision your career as you see fit. It’s the wild west version of employment – a person with guts and willing to do the hard, dirty work can build a homestead that will last and suit their needs.

The paths of a freelancer are many. From photography to web design, programming, writing, administration, travel, child or senior care, health services…the sky is the limit of what you can do. And there are plenty of temp agencies ready and willing to hook you up with clients if you need a good place to start building your freelancer cred.


If working for yourself isn’t enough, you can push the envelope by creating your own company. This is a great path for those risk-lovers who feel as if the ideas they have can revolutionize the world. Of course, the vast majority of new businesses don’t last the first few years, but the advent of the internet has also given birth to a sort of middle ground. People can now limit some of the costs of running a business by working exclusively through websites. There are also sites such as Etsy, where artisans can sell their wares without having to build a website or do all their own marketing.

However, if you’re not a risk-taker or if you’re not willing to sink every last penny you have and every second of your day into making your business thrive, then finding way to support yourself might be a better option.

My Two Cents

There is no “perfect” job or style of employment. In the end, it all boils down to what your personal priorities are and the risks that you willing (or not) to take to get there. For me, my need for flexibility and control over my schedule trumps the need to make massive amounts of money. I live with my mother and, while that’s not my ideal, it allows me to choose the assignments I want to take, instead of feeling pressured to take every assignment, no matter how I’m feeling. It’s a trade-off and, for me, it’s well worth it.

More Information:

Why Traditional Employment is Better than Entrepreneurship –
Comparing Freelancing to Traditional Employment – Freelancing
How work-sharing can save employers money – USA

What other ways are there to earn a living – without wrecking your life?

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