Living with Diabetic Peripheral Neuropathy: Insights and Resilience from Two Women’s Journeys

Living with diabetes brings a host of challenges, and one that many may not anticipate is diabetic peripheral neuropathy (DPN). As you’ve read in our previous articles, this nerve damage, often a complication of both Type 1 and Type 2 diabetes, can cause pain, numbness, and loss of sensation in the feet and hands. In this final article, we share the experiences of two women living with diabetic peripheral neuropathy, Daphene K and Joy H. They offer valuable insights and lived experience on managing this condition and navigating the healthcare system.

Daphene K: Type 2 Diabetes and a Long Road with Peripheral Neuropathy

Daphene K, who has lived with Type 2 diabetes for 40 years, first began experiencing symptoms of peripheral neuropathy in her 50s, after working in healthcare with ventilator patients in very cold rooms. Initially, she thought her symptoms, numbness and tingling in her legs and feet, were caused by the physical demands of her job and would improve with rest. However, over time, the symptoms persisted and worsened, despite her efforts to make lifestyle changes like wearing thicker socks and taking breaks.

“As a healthcare professional I knew a great deal about neuropathy,” Daphene explained, “yet it is different when you are the one affected with the problem.” Her right leg, from hip to foot, is the most impacted by the neuropathy. “My knee has become the cause of three falls over a two-year period,” she shares, describing how her symptoms have affected her balance and mobility. Despite these challenges, Daphene has set a goal to walk 3,000 to 5,000 steps daily, which helps her manage both neuropathy and diabetes, and maintain a sense of independence.

Daphene’s treatment approach includes staying active, staying warm, listening to her body’s signals, and speaking openly with her healthcare team to ensure her concerns are heard and her needs are met She has explored therapies like water therapy and heat massage, which have provided some relief. However, she feels that more support is needed in rural areas for people with neuropathy, especially for those seeking specialized care.

One of the emotional impacts of living with peripheral neuropathy for Daphene has been the need to adjust her social life and travel plans. “I’m not as active as I used to be,” she admits. “I pace those things differently and allow more time for rest.” She has also had to accept that her condition is part of the aging process. “I don’t compete with others, and I am good with my accomplishments,” she says. Daphene’s philosophy of resilience shines through in her statement, “I’m never a victim; I’m a victor.”

Joy H: Type 1 Diabetes and the Struggles of Peripheral Neuropathy

Joy H, diagnosed with Type 1 diabetes in 2011, had little knowledge of peripheral neuropathy before her own diagnosis. Her symptoms began with discomfort in her feet, burning and stinging sensations, and gradually worsened, particularly in her right foot. “Shoes were not comfortable,” she recalls. “My feet were burning and stinging.” As her symptoms progressed, Joy noticed that stubbing her toe triggered an increase in burning sensations, which has remained a concern.

For Joy, managing symptoms has been a balancing act, as she also deals with bunions and other foot issues. She also found that lifestyle changes, such as reducing her intake of sweets and walking regularly, help her manage her condition. “Walking is one of the most helpful coping strategies for me,” she says, although she admits it can be painful at times. Joy’s treatment regimen has included medications like gabapentin and supplements such as alphalipoic acid, but she feels that more options are needed for people living with diabetic neuropathy.

Emotionally, Joy faces the constant worry that her symptoms may worsen to the point where she may lose her ability to walk. “I dread it increasing,” she says, sharing the fear that comes with the uncertainty of nerve damage progression. However, Joy has not felt isolated by her condition and continues to manage her symptoms as best as she can.

Insights for Managing Peripheral Neuropathy in Diabetes

Both Daphene and Joy emphasize the importance of staying active, listening to one’s body, and seeking out the right treatments. For Daphene, staying warm and making adjustments in daily life are key to managing her symptoms, while Joy focuses on the benefits of supplements and regular walking. Both women also stress the need for better resources and support for people living in rural areas, where access to specialized care may be limited. It’s also important to ensure effective communication with your healthcare team and ask to be referred to a neurologist or a pain specialist.

Daphene’s advice for others dealing with peripheral neuropathy is straightforward: “Stand your ground. Speak until you’re heard.” She encourages women to be proactive in managing their condition and to seek out resources that can provide helpful information.

Joy’s advice for others is simple but essential: ” Ask your healthcare team about supplements,” she advises, reflecting on how her doctor  recommended certain ones that can benefit those with neuropathy and how they have helped her manage her symptoms. Her approach emphasizes the importance of early intervention and being proactive in managing diabetic neuropathy.

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The stories these women have shared highlight the emotional and psychological toll of living with peripheral neuropathy, but also the strength and resilience that can come from being proactive in managing DPN. They encourage others to take an active role in their healthcare, seek out the resources available to them, and, most importantly, not to ignore the warning signs of neuropathy. In the words of Daphene: “Be positive and proactive, less reactive.” It’s a message that resonates deeply for anyone living with chronic conditions like diabetes and diabetic peripheral neuropathy.nice has authored multiple publications and developed numerous programs on diabetes nutrition, digital health, and practice transformation.  Her passion is developing business-savvy solutions leveraging technology to transform care.