“But you don’t look sick!”

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Most people with lupus show few truly noticeable signs of the illness.

Some may have a rash that comes and goes; a very few may suffer arthritis that is noticeable (this rarely happens early on), and those who are on steroids for several weeks may acquire a puffiness to their face that they could live without.

You may struggle to pull yourself out of bed in the morning, but once up and dressed, others would be hard-pressed to know you are ill. What you will primarily hear from people if you mention your illness is, “But you don’t look sick!”

This is both good news and bad news. It’s good not to have to have to discuss your situation with the peripheral people in your life. But you are going to find that people are hard-pressed to understand how tired or sick you may feel since you don’t “look sick.” This says everything about them and their lack of knowledge. It says nothing at all about you.

Sympathy Can Be Nice But…

While a little sympathetic understanding can be nice at times, in general you are better off being able to pick and choose those with whom you share how you’re feeling.

  • Yes, tell your co-workers if you’re having trouble with your current workload. There may be a way to redistribute the work or the timeline of a project so that you will feel less pressured.
  • Yes, remind your family so that they will help. Teenagers are really good at forgetting that they are not the center of the universe. If you ask for help, you’ll very likely get it.
  • Think through outside commitments. If you are an active volunteer, this may be something to cut back on temporarily. If you were doing all the planning for a family reunion, ask for help. (Lots of lupus patients are Type A—it’s not easy to step back, but it will help you temporarily.)

That said, managing lupus and the flare-ups that occur can be a heavy burden. If you’re in the Los Angeles region, there is very likely a support group near you. Please contact Lupus LA (310-657-5667 or kmcmahon@lupusla.org) and ask if there is one in your area. Having the opportunity to spend time with others (under the guidance of a facilitator) can be a great way of gaining needed personal support.

Brought to you by Lupus LA.

Research based on The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace, M.D.