Patient perspectives from a public relations executive

Antidote is a company that focuses on connecting patients with clinical trials. Hearing directly from people helps us to remember why we do the work we do. Linda VandeVrede is a former high-tech PR executive and chronic pain patient who has shared her personal story, as well as the results of clinical trials.

Linda is a key voice in the advocacy of research. She found us on social media, and she agreed to speak with us about the ways she has channeled her career lessons into her self-advocacy. Continue reading to find out more!

Perspectives of a Chronic Pain Patient

Linda’s job took her to Europe frequently in the mid-2000s. It was on these flights that her chronic pain started. Her pain increased in the air but subsided once she landed. Due to her busy schedule, Linda didn’t have much time to address the problem. In 2007, Linda felt an intense sensation in her leg. She immediately went to the doctor. Linda began her quest to find out what was wrong when the X-ray showed no problems.

Linda had to quit her job due to her pain. She couldn’t stand or sit for long periods in front of the computer. She spent the next five years of her life trying to find an answer. She sought out neurologists, acupuncturists, and physiatrists, but none could offer any relief. She says that after a while, she gets the impression that doctors don’t think you are in pain or want to help someone else.

Linda, desperate to find answers, found an online forum with people who had the same symptoms as her. She found the answer through members of the forum: Piriformis syndrome, a condition where the piriformis muscles suppress the sciatic nerve. This condition is rare and usually caused by repetitive or sudden trauma. She found a paper that perfectly matched her own experience. After contacting the surgeon who wrote it, she began to see progress in getting relief.

The surgeon instantly understood how to trigger Linda’s pain and believed that he could address it. Linda was thrilled to have found someone who “got it.” She agreed to invasive surgery, where the doctor released some tension. He also found irreparable damage to her sciatic nerve. Although the surgery was beneficial, the nerve damage had already occurred by the time the patient received it. Her quality of life could not be restored. The results might have been different if she had received this surgery ten years sooner.

Linda, unable to find relief from her pain, lives in constant discomfort. She speaks out against sensationalist stories about drug-addicted patients in pain and awaits trials of a new medication class called sodium channel moderators. She is well-informed about chronic pain and treatment options but still finds ClinicalTrials.gov frustrating.

Linda not only advocates for better pain solutions but also speaks out about the importance of clinical research. She has built an extensive social media network, which allows her to communicate with the other 100 million people who suffer from chronic pain. She says: “When you are in pain, it’s unlikely that you will advocate for yourself. People can’t tell that you’re disabled, even though it’s very disabling. You can spiral. “I try to be positive for myself and everyone else.”

Linda’s advice to patients is to recognize early that you are the best advocate for yourself. It would be best if you were not afraid to speak up at doctor’s visits and educate yourself. The patient is the expert in their feelings, not the doctor. Linda was so kind to share her wisdom with us. Click the button below if you are a patient searching for clinical trials.

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