Heartbreaking, But Freeing
For some people working with lupus, a 40 (or more) hour work week is totally feasible. As long as they control stress and stay on top of their symptoms, they can be reliable workers and it won’t upset their health too much.
Unfortunately, that isn’t the case for many of us, and that means rearranging our dreams. This can be totally heartbreaking and crushing, especially if you have to let go of a dream you’ve had your entire life because of lupus.
But it can also be strangely freeing. It means that you, and no one else, is in charge of your future.
What I have realized in rearranging my own dreams is that had I not had lupus, I might have been able to be a human rights lawyer, but I can’t really see myself happy in that sort of job. Aside from the fact that a human rights lawyer works long hours, it would have involved lots of paper pushing and desk sitting — neither of which are all that appealing to me.
If your dreams have always included something that lupus now makes impossible, it is totally your right to be upset and throw yourself a pity party. But think about your hobbies and interests and work creatively.
The internet has opened up opportunities not previously available when it comes to career options, and if you speak to a career coach or a career counsellor, you may be surprised at the careers still available to you. These options can include freelancing, part-time work with a work-at-home supplement or a complete work-at-home role, making it possible to be financially independent and working around your pain, fatigue and sickness.
And if your passions involve something you can no longer do because of lupus, there are always ways to stay involved in what you love. Although I can no longer act, I will always have a love of theatre and I will always stay involved.
I take dance lessons once a week, periodically write plays or help others write plays, do dramaturgy work (researching a play, specifically the era it takes place in or the culture of the characters) and am always up for the role of an audience member.
While there are things I would love to be able to do, I am trying to see the bright side. Even if that bright side means there is more uncertainty in my life than there is for “healthy” people, no one is promised anything, really. And living with lupus often means learning to accept that.
Things to Consider
If you are rearranging your life goals due to lupus, here are some things to consider:
- How severe are your symptoms and how many hours a day you can realistically work? Can you work full-time if you’re at home? Part-time outside of the home?
- What is your daily level of pain? This may mean you will have to scratch off previous career choices that involve either a huge amount of typing or that involve you on your feet all day. However, for some people, neither of those are a problem.
- If you plan to be on disability or remain on disability, you need to double and triple check how much extra income you are allowed to make while still receiving your benefits. Carefully weigh whether or not it is worth it to continue on disability or if you should work to make up the difference. This is a decision that should be made after consulting with your rheumatologist as well as observing yourself in daily activities.
- If you have to choose a whole new line of work, begin to think about what you are qualified to do and about your hobbies. Make an appointment with a career counsellor to discuss your options. If you have to go back to school to earn another degree or credential, don’t overdo it. There is nothing wrong with taking one or two classes at a time and taking it slowly. You may even be able to earn your complete degree or credential online, allowing you to complete work at your own schedule throughout the week.
- Remember, most get rich quick schemes are not real. If you are looking to be employed online, there are plenty of legitimate places that will hire you to work from home, that will either pay you a reasonable salary or build up income over time. Be very vigilant and aware of work at home scams.
