When Jen set out to raise awareness for PN,, she did more than she expected. Her outreach helped others and brought people together. Jen shares her story here.
I never thought neuropathy would be part of my story. Prior to my diagnosis, I was a healthy 39-year-old writer, health coach, and personal trainer. I ate well, exercised regularly, and didn’t drink or smoke. I don’t have a family history of neuropathy or an identifiable autoimmune disease, nor have I been exposed to known medications, treatments, or toxins that put me at high risk.
Yet, in March of 2021, after 27 months of unexplained burning pain in my legs, hands, and feet, a skin biopsy revealed small fiber neuropathy—a disease characterized by damage to peripheral nerves that relay messages regarding pain and temperature to the brain. To date, my neuropathy is idiopathic, meaning doctors don’t know what caused it. Without a cause, there is no cure.
On the outside, I look fine, but most of the time my lower body feels like it’s on fire. The reality of living with an invisible illness like neuropathy is it seems like no one understands. Many feel anxious about their uncertain future, alone in their pain, and misunderstood.
Raising Awareness For PN
It is for this reason that I chose to share my journey for Peripheral Neuropathy Awareness Week. People can only understand what it’s like to live with neuropathy if we speak up. They can only identify the symptoms and ways to support their loved ones with neuropathy if we heighten their awareness to it.
In choosing to be vulnerable and share the hard parts of my story, my hope was that it would open the door to deeper communication and connection with others who were struggling. However, I never could have predicted the number of people who would comment, share my posts, and reach out to me.
Sharing Common Experiences Brings Comfort and Strength.
After suffering in silence for over a year, Tabitha shared one of my posts as her official announcement of living with PN. Kate also publicly shared her diagnosis for the first time, and was shocked to find a couple of her friends also suffered from PN. As a result, these women are now talking more honestly about their journeys. No longer do they have to carry the burden of living with neuropathy alone.
Annie wrote, “I just wanted you to know that your posts are a huge blessing to me! You inspire me to take better care of my temple and to live victoriously instead of as a victim of chronic pain and illness.”
Others reached out for emotional support, sharing that they struggled with depression and appreciated the positivity of my posts. They said that sharing my experience and words of hope helped them feel less alone, adopt a new perspective, and continue to persevere.
Surprised to See My Posts Had Such Impact!
In addition to sharing my story, I shared a fact about peripheral neuropathy each day to educate the public about what it is, possible causes, who it affects, and how it impacts their life. Considering more than 30 million people in the U.S. are estimated to have some form of peripheral neuropathy, chances are all of us know someone with this disease. I wanted people to be aware of early signs to look for, recognize that it affects people of all ages, and know where they could go for more information.
My post on the early signs of neuropathy received the most shares. People commented that it encouraged them to seek specialists, a more definitive diagnosis, and treatment. Since this disease is often progressive, intervening early and testing for possible causes is the only way to reverse the damage. In raising awareness and increasing the dialogue about PN, my hope is that it would help someone else get a diagnosis and treatment with a lot less hassle than I had to go through.
Raising Awareness Brings People Together!
I connected with many others throughout Peripheral Neuropathy Awareness Week. We have continued to keep in touch and support one another. No longer do we feel alone. In walking this journey myself, I have a great compassion for others struggling with chronic pain and illness. It affects our spouses, our families, our level of productivity, and our overall well-being.
Scientists need to do more research to develop better testing, treatment, and education for people like me with neuropathy.
If you’d like to help, please consider donating to the Foundation for Peripheral Neuropathy. With your support, we can improve our quality of life and ultimately find a cure.