Feeling vulnerable in the face of lupus? Me, too!

My husband recently shared an inspiring article with me, and I thought I would pass along some snippets from it. The piece was written by Richard Rohr, OPM, a Franciscan friar ordained to the Catholic priesthood in 1970, who is an internationally known inspirational speaker. The selections I've included below, adapted from The Shape of God: Deepening the Mystery of the Trinity, really struck a chord with me. Back when I was fighting so hard not to let lupus change me, this was my mindset:

"Human strength admires holding on...admires personal independence.  We like control more than surrendering. We admire needing no one. We are practiced at hiding and protecting ourselves. Our strength, we think, is in asserting and protecting our boundaries."

This is exactly the way I felt those first few years with lupus - as if the only way I was going to beat lupus was if I fought to hold on to the life and abilities I had before the disease took hold. If I refused to make accommodations, and I made no allowances for the debilitating symptoms, lupus would just fold under pressure.  I didn't give in, because I thought I wasn't supposed to. I thought the onset of lupus was a test, and I was determined not to fail.

Today, in my Living Well, Despite Lupus workshops, I talk about how much I despised feeling "dependent", "reliant",  and "vulnerable" in those early years. I was uncomfortable depending so heavily on my doctor who held the key to my treatment, I didn't like relying on my family to fulfill even some of my most basic needs, and I hated the vulnerability that lupus brought - never knowing what symptoms would hit when. I felt as if my life was completely out of my control, as if I was no longer capable of asserting myself against the curves life threw at me. That feeling of weakness took its toll on my self-worth, and I wondered if I'd ever feel valuable again.

Over time, I learned to how to combat those feelings, and how to feel whole again. I realized that in fact, giving in wasn't giving up, and that embracing the disease had its merits. Eventually, I discovered that relying on the supportive network around me (family, friends and doctors included), could actually make me feel empowered, if I just allowed it to. I was deriving my self-worth from being independent and self-sufficient, but came to realize there's tremendous value in being boosted up by others in an effort to live well, despite my chronic illness. Sharing the burden and utilizing my resources not only lightened my load, but it re-instilled feelings of hope that had been absent for all too long.

My hope is that over time, you come to the same realization. I realize it takes time and effort to do so, but I encourage you to keep at it. Simply strive to embrace the disease one accommodation at a time!


Anonymous said…
I just wanted to thank you for writing a book that has helped me countless times over the past year and a half. From time to time I find myself referring to it for wisdom as I continue on the path of living with a chronic illness. I happen to have Rheumatoid Disease, not Lupus, though these diseases are kindred spirits in many ways. It was initially thought that I had Lupus and that was why I bought your book. I've went from being an ambitious, high energy, "I can conqueur the world" woman to one who must respect her body and its limitations. I still have a sense of spirit but its a toned down version of me! Thank you for continuing to share your wisdom. Wishing you all the very best in life - Roberta
Judy said…
Thank you for this blog post. This is exactly how I feel. Although I am retired, the sense of loss of control is hard. I was always the one that was never sick and thought sick people were just sick in their head!! MY motto was "If you think your sick, you will be!" My family always thought I was cold hearted when it came to them being sick, cause I made them get up, go to school or work!! I still think I can beat this so it doesn't get worse! I do believe the energy inside you makes a huge difference in how you deal with sickness. Thanks again for helping to make me see it's OK to be vulnerable, and let other people help.
Sara Gorman said…
Your words are so kind! My sincere thanks for sharing, and i'm so glad the book has been a good resource for you. I wish you all the best!
Sara Gorman said…
Your words are so kind! My sincere thanks for sharing, and i'm so glad the book has been a good resource for you. I wish you all the best!
Sara Gorman said…
Thanks for your comments--i'm so glad you can identify! Best of luck to you--your words have reminded me that vulnerability really isn't a bad word. :)

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