Having lupus is hard enough, but when a full-time job is added in, it’s almost unbearable. Sleep is always an issue. It seems like we never get enough. And then taking a shower uses up what little energy we have left. We’re exhausted by the time we actually make it to work.
I am so lucky that I can work from home most days. As a real estate broker, I used to tour four or five houses in a day. I dreaded the ones with multiple floors, as they were the hardest for me. By the end of the day, I could barely walk, much less climb stairs.
My husband is also a broker, so we formed a team. Working together means that he can do the legwork on my bad days. I’m a stickler for details, so I do most of the paperwork, and that can be done anywhere.
I love the real estate business for many reasons, but one of the big ones is that I’m my own boss. Not really, because my clients are my bosses. They are the ones I really work for. But at least I don’t have to punch a time clock.
If you have an understanding boss, consider yourself lucky. More often than not, bosses aren’t very sympathetic. Their job is to get as much work out of you as possible, and that’s just not going to happen when you’re in chronic pain or need to take off for a doctor’s appointment.
Most people with lupus will put in extra effort when they are at work, trying to make up for missed time. But this leaves them so exhausted by the end of the day, they go home and collapse. They don’t have any energy left for anything else.
When you reach the point that working full time is no longer possible, you can apply for disability benefits. When you are employed, a percentage of everything you earn is withheld for Social Security, also known as OASDI (Old Age, Survivors, and Disability Insurance Program).
You can set up an account online with the Social Security Administration to see how much you are eligible to draw each month. Even though this is money that you earned, it can take time to get disability checks started. Most people are denied the first time they apply, so don’t give up. You may want to hire a lawyer who specializes in disability claims to guide you through the process.
I consider myself fortunate to be able to work from home when I need to. I work more than 40 hours a week, but that is normal for the real estate business. If you’re to the point that you can’t keep doing your job full time, look for other options. These days, there are many jobs that can be done remotely. Find something that is interesting to you and give it a shot. If you are lucky like me, you’ll find a job you love that doesn’t require going to an office every day.