‘What do you do with the mad that you feel?’
A columnist shares words of wisdom from the late Mr. Rogers
May is Lupus Awareness Month, and for several reasons, Fred Rogers and his eponymous children’s program “Mister Rogers’ Neighborhood” are on my mind.
Fifty-six years ago this month, Mr. Rogers provided testimony to the U.S. Senate Subcommittee on Communications seeking to protect $20 million in federal funding for the Corporation for Public Broadcasting, which would affect the funding and distribution of his show, as well as other projects like National Public Radio and “Sesame Street.”
Mr. Rogers’ compelling words before Congress fit today in the lives of those of us living with chronic, rare, or not-yet-curable health conditions like systemic lupus erythematosus, an autoimmune disease where the body’s immune system attacks healthy tissues and organs, leading to inflammation and damage.
He started his testimony by explaining that he begins each episode of “Mister Rogers’ Neighborhood” with “a meaningful expression of care.”
Wow. A meaningful expression of care. Showing concern, providing affectionate touch, being present, sharing gentle advice, offering compassion, making time for one another, and praying together are all meaningful expressions of care. Profound expressions of care.
Hundreds of lupus support groups and organizations offer profound and meaningful expressions of care to thousands of people living with the disease.
In fact, the Lupus Foundation of America established LupusConnect, an online platform “that encourages its community members to ask questions, reply to posts, and read about others’ experiences in a safe and comforting community.” Providing this safe and comforting space — much like “Mister Rogers’ Neighborhood” — is an expression of care on a worldwide scale.
‘Just the way you are’
It is imperative that everyone’s lupus journey includes a support group, lupus ally, or circle of friends who live with chronic conditions. Former and current Lupus News Today columnists Christine Von Raesfeld and Marisa Zeppieri have encouraged readers to connect with support groups to experience these expressions of care and receive support and other sustenance.
The care these groups can provide is unmatched. Sharing time with others who are not only empathetic to our plight with lupus, but who are also maneuvering through life with this cruel disease brings more positive impact than we can imagine. It’s like hearing Mr. Rogers end each show saying, “You’ve made this day a special day by just your being you. There’s no person in the whole world like you, and I like you just the way you are.”
With swollen legs, bright red malar rash, locked hands, full-body pain, pleurisy, debilitating fatigue, and a disheveled spirit, the allies in that support group will like you and celebrate you just the way you are.
They understand when lupus flares and takes you through a relentless roller coaster of painful symptoms that medicine cannot mitigate. They understand when pain seems to slam you against the corridors of doctors’ offices, urgent care facilities, and the emergency room. They understand the emotions that get tattered by the currents of living in a constant state of pain and illness. They understand the anger. (If they don’t, then find another group.)
Oddly enough, Mr. Rogers’ 1969 testimony also gave voice to that when he shared the lyrics of one of his songs, “What Do You Do with the Mad That You Feel?”: “What do you do with the mad that you feel? When you feel so mad you could bite. When the whole wide world seems oh so wrong, and nothing you do seems very right.”
The song teaches its listeners that an angry response can be stopped. It shows that when the mad feeling is controlled, we “know that there’s something deep inside that helps us become what we can.”
Maybe we cannot fully control the mad that we feel with this lupus life, but we can gain awareness among our group and control how we react and what we choose to do with the mad feeling.
My strategy?
1. Find a “Mr. Rogers” — someone who gives me meaningful expressions of care.
2. Tap into that something deep inside.
3. Connect with peers who help me get through the flares — one by one — and who will celebrate with me.
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.