With chronic illness, checking in means asking, ‘How ya really doin’?’
A disease like lupus can make it hard to answer a simple 'How are you?'
Last month, “CBS Evening News” co-anchor John Dickerson shared a conversation with social scientist Richard Reeves about making “a simple act of connection.”
What Reeves suggested is for people to be proactive and check on one another. He said, “Say, ‘How you doing?’ And then ask, ‘How you really doing?'”
“You have to ask twice,” Reeves said. Because people are struggling more than you know, they will benefit from you checking on them.
Dickerson encouraged his viewers to regard Reeves’s encouragement as an assignment: Go ask them. Ask them twice. Show up for each other.
When you live with a chronic, incurable disease like lupus, it is often very hard to answer “How ya doin’?” the first time you’re asked. Reeves is right that we have to show up for each other and ask a second time. It might get us an answer that’s closer to the truth.
How ya doin’ — really?
Well, it’s time for a moment of truth — especially if you are in a flare, rope-a-doping with the great imitator, or getting stiff-legged jumped by the wolf that is lupus.
We know lupus symptoms can unpredictably escalate, so — how ya doin’? How ya really doin’? And as a friend, may I lean in and ask a few more questions?
The weather is changing. Are your symptoms changing? Who do you call first to break through a flare? Primary care physician? Rheumatologist? Infusion clinic? Immunologist? Gastroenterologist? Hematologist? Urgent care? Emergency room?
How do you feel on the days before Benlysta (belimumab) or Saphnelo (anifrolumab-fnia) infusions? What do you feel when you are dehydrated? What’s the best treatment for cold toes and fingers? Is menopause or perimenopause causing more flares?
Do you experience lucid dreams and talking? Are your joints locking and causing pain suddenly while you’re asleep? Do you scream, sob, shake to release pain? Where do you swell the most? What helps you endure?
Do you need a heating pad, weighted blanket, or a weighted heating pad? Are your gums still bleeding?
Have you tried intermittent fasting? How did it feel? Can you hear? Can you see? Has your hearing or vision changed? Do they change during a flare?
What happens when you stimulate your vagus nerve? Have any changes to your diet made you feel better?
When did you start feeling like a burden to your caregivers? What brings you hope for a cure?
Has your hygiene routine changed? More or less shampooing, shaving, bathing? Changes with flossing, using mouth wash, or oil pulling? New skin moisturizing routine? How is your sense of taste? What does your tongue look like? How long does it take for you to recuperate after being hospitalized?
Who gives you meaningful care? Are you experiencing intimacy and loving touch? Have you scheduled time to rest today?
What brings you joy? And lastly, do you know that it is OK to say you are not OK? We celebrate you anyway.
Please check in and share your truth.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.