As a little girl, Jenni Prokopy was told her aches were a result of growing pains. With periods of intense pain and times when the pain waned, Jenni dealt with her ever-changing body. It was not until 1997, when Jenni was twenty-five, that doctors finally diagnosed her with fibromyalgia.
Fibromyalgia is a neurological disorder that causes body-wide pain and tenderness in the joints, muscles, tendons and other soft tissues—in addition to periods of intense fatigue. Pain is intermittent: there are days when Jenni’s pain is all over, but mild. Other days, the pain is so intense she cannot work or socialize.
Her sensory input is heightened as well. The sound of a fire engine can cause an intense pain experience with migraines and panic attacks. Jenni likens it to a really bad flu that never ends; she is achy, tired, headache-y and fatigued most of the time. In addition, Jenni deals with Raynaud’s phenomenon, asthma and GERD.
The year following Jenni’s diagnosis was difficult. The first doctor who told her she had fibromyalgia curtly said to “take Advil and get ready for a life of pain.” Frustrated, Jenni found a different pain specialist who prescribed heavy amounts of medications. These caused her to hallucinate while on a business trip. When she called to speak with her doctor, she was informed the doctor was too busy. Jenni explained that she was seeing things, alone in a hotel room, desperate and panicked. The insensitive nurse just told her to increase her medications.
To the contrary, Jenni stopped the meds immediately. While she did undergo withdrawal, she no longer felt insane. The situation taught Jenni an important lesson about listening to her internal voice. She’d had a strong gut reaction that this doctor was not a match for her. Now she has the confidence to stand up for herself and has a new healthcare provider.
For fifteen years, Jenni has been on a quest to gain relief from her pain and fatigue. A particular anticonvulsant drug used for neuropathic pain has made a huge difference, which is why she is bothered when others say all pain medications are addictive or that anyone using them is an addict.
Jenni also uses other therapies that bring her physical relief and emotional balance. She sees an acupuncturist and a wellness coach. She uses essential oils like lavender, peppermint and eucalyptus to relax. Following a daily yoga practice helps her stay mindful and move purposefully. She follows a gluten-free diet and exercises regularly.
Physical therapy and daily use of a heating pad to relieve tension and muscle pain have also helped. Jenni has developed her own sleep routine, going to bed at the same time and using earplugs, a noise machine and blackout curtains.
“I do not know which of the twenty things I did today actually helped me stay active: it’s a symphony of resources that work together,” says Jenni. “And this list changes—sometimes, things stop working—so I have learned to be flexible and look outside my comfort zone for solutions.”
Living with a chronic illness has changed Jenni’s life. She left her job and designed a business that allows time to take care of her health. Working for herself is not always easy, yet she recognizes she is fortunate to have found a way to make it work.
In 2007, Jenni created ChronicBabe, an online resource for young women living with chronic illness that empowers, supports and unites a community struggling to find acceptance and answers. Jenni receives satisfaction knowing the project is helping other people.
Dealing with fibromyalgia has had an adverse effect on some of her relationships. Some friends can’t handle that her schedule is unpredictable due to flare-ups. Others have a hard time coping with a friend who is sick. She has experienced a divorce, as well as conflicts with her family. It is a hard condition to manage, to explain, and for others to understand. So she has compassion for the friends and family members she has lost contact with over the years.
Through her journey, Jenni has learned that she is an outrageously strong person. “Lots of people give up, and I just refuse to do that,” she says. She also understands that she cannot do it alone, relying heavily on a circle of friends and family to help her stay strong and work through issues. Just as they are there for her, Jenni strives to be the best sister, friend, daughter, girlfriend, aunt and co-worker possible. “It’s got to be a two-way street,” says Jenni. “I am not the only person who needs support and love.”
A great lesson Jenni learned is to be nurturing and kind to herself. And she understands feeling robbed of life, but she also knows there is more to life than anger. Jenni wishes people would understand that even though she may appear fine, that does not mean that she is, in fact, fine. There are days when it is difficult for her to handle the glares from people on the bus when sitting in a seat for the handicapped. The invisibility of fibromyalgia and many other illnesses can be the hardest part to cope with.
She has found different organizations, like the Arthritis Foundation, the National Sleep Foundation and the American Chronic Pain Association, to be helpful at different times during her journey with pain. Jenni appreciates the work of many non-profit organizations—particularly that of the U.S. Pain Foundation.
Jenni Prokopy is a courageous individual who refuses to let pain and fibromyalgia stand in her way of achieving dreams. “I view myself as a capable, creative woman,” says Jenni. “My goal is always to live the best life I can, no matter what’s going on with me health-wise. I have a lot to live for; the world is a beautiful place. I’m never going to give up.”