A message to newly diagnosed lupus patients: You will learn
You will learn to fast, pray, cry, meditate, forgive, and believe
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If ever you need the raw, unadulterated truth about living with lupus, you should attend diverse support group meetings. Make sure they are diverse and have a member or two with characteristics similar to yours, such as age, gender, symptoms, lifestyle, culture, and status.
These lupus support group discussions are unmatched in their delivery of truth and candid advice from people who continuously manage unpredictable flares and chaotic symptoms. I recommend you find a support group as quickly as possible leading up to or following a diagnosis. Many states have support groups hosted by volunteers with the Lupus Foundation of America, World Lupus Federation, Lupus Research Alliance, and other local lupus nonprofits that can be identified through your secretary of state office. They frequently meet virtually to accommodate more participants.
During a recent conversation, I was asked what I would tell someone who was newly diagnosed, no matter their age. Besides inviting them to read through other columns here at Lupus News Today, I would share with them everything they will learn while living with systemic lupus erythematosus.
Surviving and thriving
I would tell them: You will learn to switch your rhythm and accomplish things that have been important to you before lupus. You will learn to rewrite the script of your self-talk and be gentle. You will learn cues about when and how to care for yourself.
You will learn to fast, pray, cry, meditate, forgive, and believe. You will learn the taste of swollen gums leaning on a cracked tongue. You will learn the fruits that give you strength and the meals that strip it. You will learn the best times for treatments by weeding through the worst. You’ll learn nurses’ names and the texture of their touch.
You will learn to challenge your memory and keep your mind alert. You will learn to massage locked joints and cool an inflamed chest. You will learn to discover clothing, bedding, towels, and shoes that soothe when pain and swelling occur. You will learn to color, draw, or paint again. You will learn to enjoy audiobooks, docuseries, and sound baths.
You will learn the refreshing power of deep breathing, box breathing, lymph massages, professional stretches, and bubbles in warm baths.
You will learn to sign your name with arthritic fingers. You will learn to style thinning hair and polish brittle nails. You will learn to pronounce words like “hydroxychloroquine” and “encephalomalacia.”
You will learn to track symptoms hoping for predictability. You will learn the tenderness of skin torn by rashes. You will learn to savor the moments when love lights your core and the fear of dying abates.
You will learn to survive lupus — and thrive. One day at a time. Hour by hour. Minute by minute.
So keep learning, my friend, because soon — maybe even today — you will learn to celebrate that lupus tried to kill you and failed.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
Donald Burgess
Sorry, but I don't really agree with you. It may work for some people, just not all of them. I've had Lupus for 46 years, and every support group I participated in only made me depressed.
Javier
Hi, so excited to be part of this community. I was diagnosed with Lupus some 3 years ago and have had what I like to call "permanent flare" since then. Looking forward to share my experience and hear about other members'
Eva Hampton
I’ve been diagnosed for a few years now and while working with my doctor found that I also have fibromyalgia. This has truly been a journey the reason I say this is because through God who strengthens me prior to my diagnosis with no help with the flares and pain I found that if I was still I would have to feel the unrealistic pain but if I just stayed busy I could keep my mind off of the pain, lately it’s like I’m tired even when I first wake up and just want to take it easy but my job doesn’t seem to be willing to work with me on this without PTO I get the business part but I need to care for me first. I’m 62 and starting to look at a conversation about disability with my doctor. Any advice?