Caring for Someone with Lupus
Are you a caregiver for someone with lupus–a spouse, parent, child or friend? Because lupus is a lifelong battle full of ups and downs, with periods of health cut short by flare-ups, the uncertainty of the disease can affect your life just as much as it does the life of the person with lupus.
As a caregiver, there may be times when you need to make personal sacrifices, placing someone else's needs above your own. That said, you should always be aware of your own health needs as well–for mind and body. Follow these positive steps for coping with the challenges of lupus, so that you give the best care to your loved one–and yourself.
Learn about lupus: Information is a powerful tool. It can help you communicate better with the doctors. Learn as much as you can from trustworthy sources. While the internet is a great tool, always check your sources to make sure the information is accurate and up-to-date.
Ask for help: You can't do it all. If someone offers you help, be it a friend, family member or a support organization like the S.L.E. Lupus Foundation, take it!
Look to your community: There are places and people ready to help you. Community outreach centers, like the Lupus Cooperative of New York, can help in a number of ways, from crisis intervention, doctor referrals, and support groups to educational materials and entitlement assistance.
Set limits: Every case is different, but it's important to know how much time you can give to the person you are caring for, and when you need to think about other people or organizations that can help out.
Enjoy life: Keep in touch with friends and stay involved with your own interests. If you don't have the time to meet up with friends, call or email them. Focus on life outside of the caregiver role.
Above all, try to appreciate the time you spend with the person you care for. Stay focused–find ways to remind yourself why you are doing it.
Since my wife was diagnosed with lupus, I have had a hard time dealing with the changes in our lives. How can I best be supportive of her while dealing with my own fears and doubts?
Suggestion: It is hard to see someone you love sick, especially when you have no control over the course of their illness. Lupus can put stress on your marriage and family. Getting the wrong ideas about lupus (the person is just lazy or imagining symptoms) can lead to anger and rob the person with lupus of needed support.
The good news is that lupus can bring you closer if dealt with thoughtfully. Learn everything you can about lupus together. Doing this leads to shared understanding and open communication, with greater freedom to talk about feelings, hopes, fears, doubts, frustrations–and even guilt. Focus on the person, not the disease. Your support makes all the difference.