Book Giveaway and Excerpt: Not Weakness: Navigating the Culture of Chronic Pain

Dear KOM-ers!

We’re so happy to feature a new book giveaway!

Please enjoy this excerpt from “Not Weakness: Navigating the Culture of Chronic Pain” by Francesca Grossman.

There are 2 ways to enter to win a FREE copy:

Leave a comment below with your email address (so we can contact you)
Email us at KOMWriting@gmail.com with the Subject: Not Weakness giveaway entry

The winner will be randomly selected on 4/17/23 and announced on our website and social media. *

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After thyroid cancer, Crohn’s disease, and a slew of other autoimmune conditions ransacked her body in her twenties and thirties, Francesca was left feeling completely alone in her chronic pain. Constant, relentless, often indescribable, and always exhausting, it affected her whole life―intimacy, motherhood, friendship, work, and mental health. Yet it was also fairly invisible―and because of that, Francesca felt entirely alone in the centrifuge of her own pain. But after twenty-plus years of living this way, isolated and depressed, she started to wonder: if she lived in pain, others must too―so why couldn’t she name one person in her community who suffered like she did?

On a whim, Francesca started asking women in her community if they had chronic pain―only to find that she was surrounded by women also battling in silence. The more she spoke to people, the more she found common themes and experiences, proving that her stories of pain were not unique, and neither were her feelings of loneliness and seclusion. Liberated by this discovery, Francesca realized something: while she couldn’t alleviate anyone’s pain, maybe she could lift the shadows surrounding it―bring these common stories into the light, with the goal of helping her fellow chronic pain sufferers feel a little less alone.

Imbued with a deep respect for the women who tell their stories in its pages, as well as a healthy skepticism of the healthcare world and how it can silence, shame, and ignore women in pain, Not Weakness is galvanizing memoir about living and loving with chronic pain.

Excerpt: Chapter 10: Kindness, A Root of Healing

My primary care physician, who I’ll call Dr. H, is a wonderful doctor. She doesn’t treat most of my issues but she is always willing to walk me through problems, investigate new pain, and listen to me as I spew guesses about what’s happening based on nothing but intuition and too much googling. She’s kind to me in every interaction. At Dr. H’s office, there is a PA named Joy. I always revel in her name because she presents herself with joy . . . full of happiness and zest for life. I have never been to the office and seen her without a smile on her face. She has always been helpful, never harsh, and sweet even in the most complicated messes.

I went to see Dr. H for a chain of swollen lymph nodes. They were so painful, I couldn’t speak. They pulsated. I had a COVID test, since it is the obvious culprit for everything right now, but it was negative. I had numerous blood tests, urine tests, scans, and X-rays over the next couple of days. I went in for a follow-up. I was in less pain, but the chain was still there, and I found myself crying whenever I tried to move my head. I looked rough. Every person who saw me commented on my swollen neck. It had been my birthday, and even though I felt awful, my friends took me to lunch. When I posted a picture of the three of us, I had four comments in two minutes that something seemed wrong.

Joy sat in a little hallway between the waiting room and the exam rooms. She was the gatekeeper. She called a patient’s name when the doctor was ready and recorded weight and blood pressure before the patient went to a room.

As soon as she saw me, she ushered me into an exam room, skipping the hallway.

“Not any better?” she asked.

“Not really, no. Look at how swollen.”

“Kids scared to look at you?” I laughed.

“No, I don’t think so.”

“Well, don’t worry, you always look lovely,” she said.

Maybe that’s the wrong thing to say. Maybe some people would find it inappropriate or unhelpful. But to me, after a week in which my entire face changed in a matter of hours, it was comforting. Joy didn’t have to say anything. But she knew me since I was there all the time. And I knew her. And though our relationship usually began and ended in the little hallway, I always felt safe when she was around. The moment and her comment buoyed me enough that when we still couldn’t figure out why the nodes weren’t dissipating, I felt the echo of her kindness settling in the room. It was a very small thing, but it made a very big impact.

Right after Joy left the exam room, Dr, H. came in. “Hi, Francesca, nice to see you,” she said. She talked to me for a bit, examined me, spending a lot of dedicated time probing and looking at my neck. Then, she invited me to sit next to her while she recorded her notes.

“I hate to say it, but I think this might be a reaction to the new medicine you’re taking,” she said.

I had already guessed this. All the tests she had ordered had already come back negative, but I was disappointed because this new medicine, a mood stabilizer, was the first one that had worked well in a very long time.

“It’s okay,” I said. “I was feeling all right before I started on it. It’s not like I was in a dangerous place.”

“But you were feeling good on the medication.”

“I was.”

“You deserve to feel good,” she said. “If you were in a place where your brain felt good, you should get back there. You deserve that.”

There was something so simple and beautiful about the way she said this. I deserve to feel good. I deserve to feel better. How revolutionary. And even if I don’t feel good, even if I feel terrible, I still deserve to feel good. It might feel like a small click of understanding, but it hit me hard. I haven’t done anything wrong to be where I am. It is not my fault. Her statement reminded me of this, and I needed the reminder.

The women I spoke with for NOT WEAKNESS lit up when I asked them to tell me about their experiences with kindness. In almost every case, the women were happy and eager to recount moments and people who have changed their lives simply by being kind.

Leslie has lived with inflammation and pain her whole life. She was eventually diagnosed with endometriosis and subsequently suffered two serious car accidents in the span of a couple of weeks. She was later diagnosed with osteoarthritis and Achilles tendonitis. She also lives with allergies and immune responses so severe that she must carry medicine with her all the time. When I asked her about moments of kindness she had this to say:

“My nurse from my immunology team has been my lifesaver. “For over five years, I had to commute to Boston for my monthly shot. The stress of timing public transportation, dealing with school drop-off for my elementary school child, and the worry of getting there late was causing my blood pressure and anxiety to be high at every appointment. “One time she said to me, ‘Book whatever time and when you get here, I will give you the shot. No worries if you’re late or not.’ “Her recognizing how stressful it was for me took all the pressure off and moving forward my

trip to Boston every month was so much more relaxing and the most peaceful time of my week. That little gesture made a big difference.”

Kate was diagnosed at twenty-three with a rare neurological disorder called trigeminal neuralgia (TN). TN makes makes the neurons in her face burn at the slightest touch.

She told me:

“The kindnesses I remember most were the tiny ones. Coworkers who would notice me having a nerve attack while they talked to me and gently ask if I needed a minute. Coworkers who noticed it was a windy and rainy day and would ask if they could grab me lunch so I didn’t have to go outside. “I had a friend who would wait to leave work so he could walk in front of me and be my human shield from the wind as we walked across the bridge. “When I had neurosurgery, I had a friend fill my freezer with soup and meet a plumber at my house to fix a leaky pipe. “There was a nurse who met my mother on the side of a highway to give us a prescription. “These kindnesses were so simple and easy but literally saved my life.”

According to Dignity Health, “Recent studies validate that when physicians listen and patients feel heard, patients experience relief from lower back pain and feel better about their care. In a randomized controlled trial of patients with irritable bowel syndrome, patients who were treated by practitioners who were warm, listened actively, and expressed compassion for their condition experienced less pain, less severe symptoms and greater health improvement than other patients in the study. Similar results of feeling heard and supported have been found to relieve pain for patients with headaches and a variety of other painful conditions, leading to a general conclusion that better communication and listening have a positive influence on controlling pain.”1

Is this all a placebo effect? Do we trick ourselves into feeling better if someone is nice to us?

In his 2017 piece “How Kindness Can Heal,” Dr. David R. Hamilton explains why it isn’t. “So, given that oxytocin is such a potent cardioprotective hormone and that we produce it when we’re being genuinely kind, we can therefore say that kindness is cardioprotective— that kindness reduces blood pressure, acts as an antioxidant and an anti-inflammatory. Indeed, we’ve probably all felt that relaxing, calming sense that kindness brings, whether we’re the person being kind, the recipient of it, or even a witness to it, and even sometimes a warm feeling in the chest, which is caused by an oxytocin-stimulated increase in blood flow to the heart. And there’s more. Oxytocin—our molecule of kindness also helps speed up wound healing. Under conditions when oxytocin levels are low, certain wounds can take longer to heal. Part of the reason for this is that oxytocin promotes angiogenesis – regrowth of blood vessels – which is vital to wound healing. When we get plenty of oxytocin in our bodies, wound healing is more at an optimum. Kindness really does heal.”

Love is big. I’m lucky to have so much of it. But kindness is often small. Reaching out instead of recoiling. Checking up instead of writing off, texting, nodding, smiling, giving a one-armed hug. A calming song, a cool cloth. A sweet phrase. A compliment. Small gestures that in retrospect make huge differences.

* By entering this contest, you give consent to Kind Over Matter to use your name for promotional purposes on our website and on all social media.

NOTE: You can pre-order Francesca’s book from BookShop, Barnes & Noble or Amazon.