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Getting Expert Help for Lupus Fog

When it comes to lupus fog, don't go it alone. Experts can help teach you ways to work around the cognitive symptoms.

Orosz suggests getting a referral to a neuropsychologist. Other types of experts who may help you cope with lupus fog include vocational counselors, cognitive therapists, and some occupational therapists.

Make sure these specialists have experience helping people cope with concentration and memory problems. They don't need to be experts in lupus specifically. Other conditions – such as MS and fibromyalgia -- can cause similar types of concentration and memory problems. But the specialists do need to know how to help people with brain fog.

Pay attention to the costs. Insurers will hopefully cover a referral to a neuropsychologist, Orosz says, but coverage for cognitive therapy or occupational therapy might be more limited.

Living with Lupus Fog

  • Be honest with yourself. If your lupus fog symptoms are mild, you might not need to alter your routine much. If your lupus fog is severe -- or long-lasting -- you might need to consider big changes to your life and career.

That’s not easy. Just remember that trying to maintain a schedule that's become too demanding -- and living in a state of panic and anxiety -- will make you miserable. It will affect your family. It could very well worsen your lupus too.

"Having lupus fog will force you to change your expectations sometimes," says Orosz. "It can be really hard to let go."  But making a big and necessary change will likely benefit you and your family in the long run.

  • Be open with your family. Have an honest conversation with your loved ones about lupus fog. Make clear that lupus fog is not dangerous. It will probably come and go. They also need to understand that when things slip your mind -- like a child's soccer game or recital -- it's a symptom, and not because you don't care.

Enlist your loved ones' help in supporting your memory. Ask them to use notes, texts, or email to remind you of things, instead of just telling you. You and your spouse may need to change how you divvy up responsibilities too.

  • Consider talking to your employer. Lupus fog can be especially hard to manage at work, where concentration and memory problems might make you look lazy or unreliable. Some people with lupus decide to talk to their managers about the problem.



    Plan for the conversation. You need to know what you want to say and what you want to ask for. Some modest changes -- modifying your hours or allowing for a little extra time on certain projects -- may help. Before the talk, you may also want to talk to a counselor – such as an advocate from the Job Accommodation Network (JAN) -- about your rights under the Americans with Disabilities Act.

Community TV:

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