When you first found out you had lupus, the future probably seemed full of uncertainty. But eventually you found ways of coping with the many sides of this unpredictable disease. What would you tell a friend now, who has just been diagnosed with lupus?
Send your answer, in 50 words or less, to lupusnow@lupus.org, with "My View" in the Subject line. We'll print as many as we can in Lupus Now's Summer issue (out in June).
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8 comments:
I've had it since 12/1996. I thought it was a death sentence too, it's not. Tell family, friends, lean on them for support. Make sure they don't pity you though, you don't need that. Research our condition. Educate yourself then do your best to fight & NEVER give up!
It was 2005 when I was diagnosed after approx. two months of wondering what the hell was wrong with me. But eventually I learned how to cope. You can't do it alone, a good support system - friends, family or that special someone. Additionally, a good spiritual connection hey that's the defense mechanism right there. KNOWLEDGE IS POWER, so bookmark lupus.com and live life to the fullest.
I was diagnosed in the yr of 1996 and had not a clue as to what Lupus was so of course I had to do my homework. Having Lupus has really changed my life but having that family and friend support is really important and with God all things are possible.....
It took 3 years for them to diagnose me with Lupus and RA. Educate yourself and don't be afraid to get a second or third opinion.Find a doctor you are comfortable with and doesn't mind taking the time to answer all of your questions.Learn to live with it and accept your limitations.But also live with it don't let it take over your life.Be active in your treatment not passive.
I was relieved. I felt I would get some relief from the health problems that I had been experiencing. I learned to simplify my life. I started to accept that it was OK to take short cuts in the kitchen, clean the house a little at a time, organized medication trays for a month in advance, shopped at stores that took my groceries out and yes paper plates are OK! I made a priorty to get well, rest, and especially by making exercising a regular thing. I would also say that regardless of the twist and turns this disease can manifest, find time to laugh, not take things too seriously, laugh, see the "down days" as a time to paint your nails, read, and as much of a challenge as it can be, not to allow lupus consume your every thought and conversation. Oh, and pets help but get one that is easy to manage.
I've been diagnosed with SLE, Nephritis since 2002. It hasn't been the easiest road, but I do not regret my diagnosis. With my trials& struggles also come my triumphs& smiles. My advice to others living with the disease is to pray hard, be kind to others &live the best life that you can live. Just because you have Lupus doesn't mean you're limited in doing what healthy people do.
i was diagnosed with lupus almost two years ago. It has actually been really rough for me i am a single mom of two. I still have yet to see a specialist for this i can't get into one because of my insurance limitations. So if you get diagnosed just make sure you immediately take charge of a doctor, prey, take good care of your body because it can be very hard on you. Yet if you see a doctor, take care of yourself you will be fine.
In the early 1990's I was diagnonsed with SLE after repeated bouts with Pluerisy and chronic fatigue. Finally a positive ANA blood test, then my Mom was also diagnosed. We bounced from Dr. to Dr. Be your own advocate, find a Dr. you trust, stay positive!
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