If you have been diagnosed with lupus at a time in your life when work is important to you, adjusting to a new lifestyle can be an additional challenge. Almost everyone wants to work and to be productive. Working, whether it is in a paid job or volunteering, is very important to our well-being and self-esteem. However, for a person who has lupus, that can be a difficult task.

On the job

The first question becomes ‘Should I tell my employer I have lupus?’. This is a personal decision that only you can make. Here are some situations and examples that may help you decide. All considerations need to be weighed carefully.

Some enlightened employers are willing to make changes to the work environment and schedule to accommodate an employee’s changing needs. Where it would be helpful, for example, they might:

  • make working hours more flexible,
  • change the lighting (for some, sunlight and fluorescent lighting can cause lupus flares),
  • provide rest periods,
  • change work duties,
  • provide a temporary leave of absence,
  • or, if the job can be done away from the workplace, making it possible to work from home.

These are just some of the actions that could be taken to enable you to do your job with a minimum of discomfort. Such accommodations will also reduce your stress level in the workplace. Remember, stress, whether good or bad, can make your lupus worse, and in some instances might even bring on a lupus flare.

Consider Jack: he lives on the West Coast and works for a professional firm. He decided to tell his employer that he had lupus. His employer was very concerned about his well-being and looked into what could be done to assist him with his work.

His desk chair was replaced with an ergonomic one. The lighting in his office was adjusted and his work schedule rearranged.

These actions made it easier for Jack to deal with his illness and his lupus remains under control. Needless to say, Jack continues to work happily at his job.

On the other hand, it does not always go that well. Consider Jane, twenty-seven years old, employed by two professionals. She had lupus since childhood, and made no secret of it, both with her employers and co-workers.

Everything was fine for about five years until Jane started to flare and began losing time at work. She explained her condition to her employers and to her co-workers, thinking she could make them understand about her joint pain, fever and flu-like symptoms.

Lupus often does not affect a person’s appearance, and Jane didn’t realize that, because she looked so well, her colleagues didn’t understand what she was going through.

Inevitably, problems arose. Her employers had misgivings about the time she was missing from work but were reluctant to discuss it with her. Her co-workers resented having to pick up the slack and started to make nasty comments.

When Jane walked into a room, they would immediately fall silent. She knew they had been talking about her. The situation grew worse and worse until Jane finally resigned.

It was years before she was able to resolve in her own mind the hurt and anger she felt about how she had been treated because of her lupus.

If you decide to tell your employers about having lupus, make sure you educate them with an up-to-date information package. But that is not enough. You need to tell your employer about your particular symptoms (remember, symptoms vary widely from person to person) and to communicate your specific accommodation needs clearly, rationally and coherently.

Applying for a job

Should you indicate that you have lupus when completing a job application form? Again, this is a personal decision that only you can make.

Some employers follow the trend to be sensitive to equity issues and people with disabilities, and will be quite willing to hire you if you have the skills for the job. Others will not. Existing policies seldom cover every situation.

The Human Rights Code in your province prohibits discrimination on the basis of a disability, and if you feel you have been refused employment for which you are qualified, you can file a complaint with the Human Rights Commission in your province (see the examples in the section ‘Case Law’). Bear in mind, though, that such appeals take a long time to go through, and can be quite stressful.

In any case, you do not have to mention any disability in your application, and whether you do or not depends on whether you feel right about it, and whether you think it will be useful or not.