My View: Summer 2011
There was an overwhelming response to the Summer issue’s “My View” question: “What would you tell a friend who has just been diagnosed with lupus?” Because we only had space for five submissions in the magazine, we have posted the rest here. We think you’ll find plenty of excellent suggestions to choose from! Our thanks to everyone who took the time to write in.
“What would you tell a friend who has just been diagnosed with lupus?”
There are lots of medications and therapies to help you. Try to find a support group in your area or talk to people online because NOBODY understands what you go through except others who are going through something similar. Always stay positive, have fun, educate yourself, communicate (sometimes forcefully) with your doctors, be thankful and grateful for every day because there is always someone way worse off than you are. Turn to God and pray and have others pray for you...it works...I know.—Pam
Watch what you eat daily. Try to go organic [with] non-processed foods. Work daily on releasing stress. Work out at least 5 days [a week] and do yoga or Pilates. Surround yourself with positive people.—Liz Witter
You can live with lupus. Don't push yourself, it's OK to do things a little at a time, and it's OK to ask for help. Keep smiling and take each day as it comes.—Anna-Jane Vassallo
It's going to be a fight, but you will find a strength inside you that you never thought you could have. When doors to life and normalcy shut, fight like hell to find a window. If you keep fighting back, lupus will never be able to take over your life.—Charlene
Seek the support and help from those around you. Don't be afraid to ask for help. Educate yourself but use multiple sources. Finally and most important, listen to your body! Rest when it says rest and don't feel guilty about it.—Cindy Sawyer
Take every moment as just that: a moment. Truly, time, patience, and rest are essential to begin the emotional healing process of living with a chronic illness as opposed to being defined by one. The most challenging thing has been to not let lupus define me, even on the days it dictates what I am capable of doing.—Anya Brodsky-Smith
Be kind to yourself, be kind to those around you. Educate loved ones. Take time to care for yourself first so you have endurance to care for others. Find humor, chocolate and tolerance with your condition. You don't have to like it, you just have to accept it.—Paige Collins
Advocate for yourself—because the symptoms of this disease come and go, and vary so widely, it is not easily diagnosed or treated. If your doctor dismisses your symptoms, go find another! Always take your meds, and enjoy the things you like to do when you’re feeling well, and don't feel guilty.—Jeanette Mccarthy
I was unstoppable until this disease knocked me on my behind. Words couldn't express the terror I felt. I was scared. With encouragement, support and research, it comforts me to know I am not alone. I am still unstoppable. With every bad situation, good will come out of it.— Carolyn Kingsley
Good physicians, right medications, change of lifestyle and diet, and no pity parties! Lupus does not rule me, I rule it. Laughter is the best medicine, and it’s OK to laugh at the fact that things are different now. What is important in life is so very clear now and life is good. Surround yourself with your personnel army of support and find the humor and appreciation of every day.— Margie Rainer
Don’t use lupus as an excuse to fail. You define lupus, it doesn’t define you. So get out there and do anything you want, even though people will set every limit on you. Keep asking if you don’t understand something, and research everything.—Kari Wall
Having lupus means you embrace the good days and try not to beat yourself up during the bad. You can live a “normal” life but you have to listen to your body. Rest when you know you need to and trust that each flare will eventually pass. And you’re never alone, I promise. We’re all here to support each other.—Maurissa Tancharoen
Not a day goes by that something in my body doesn't remind me that I have this "lovely" disease. It's hard because people look at you and think "you look fine." Just smile and try to keep a great sense of humor. IT is what IT is, but it doesn't have to define WHAT or WHO you are!—Amy Bass
Educate yourself about the disease and if you don't have a strong support group, find one. Don't ever be afraid to say, ‘I need someone to listen’ or just someone to give you a warm smile. Sometimes people with lupus feel like no one understands but there are people who feel your pain and have walked in your shoes with this disease, even though it affects people differently.—Antinea Carpenter
When I was first diagnosed with lupus, I was fortunate to have been given a referral to a counselor who worked with people with chronic diseases. Working with the counselor, I learned to understand the different emotions and phases that I would be going through while grieving for the loss of my health [and] that the next steps would be to move on to accept and then learn about my disease and how to cope with it. I don’t know who gave me the name of the counselor, but following through on that referral was one of the most important steps for beginning my life again after lupus.—Sue Frost
When I was diagnosed 32 years ago, the future seemed uncertain. Flash-forward to 2011. You can live long and full life with lupus. My advice is: find a doctor you click with. Always educate yourself. Surround yourself with positive people...weed out the negative. Eat well, sleep well and enjoy a fulfilling life.—Judy L. Adolph
Relax, maintain a positive attitude; this will be your best defense. Concerning “support”—make yourself your best and most reliable source. Disregard skeptics who may question the intermittent nature of flares. Consider other diseases, and you will realize that you’re rather lucky to have lupus, if you must have something!—Linda Bogardus
I am a very active person who was diagnosed with lupus. The slow days when I can hardly walk and the pains traveling here and there are not pleasant. But I refuse to let these things get the best of me. I stay positive, rest when I have to, take medicine when needed, and do all I can on the good days. Love those good days. I will not accept defeat. Fight! And enjoy each day as it comes.—Louise Linda Sherriff