Kelsey is a Champion that has taken control of her story and life through sharing her experience with chronic pain.
Champion Spotlight is a series that features Mayo Clinic Champions and celebrates the effect they have on people’s lives. Tony Hart, Mayo Clinic Champion specialist, talks with Champions who have provided hope for others in their own ways.
TONY: Can you tell me a little about your healthcare journey?
KELSEY: I spent more than ten years – ten years – trying to understand why my body was betraying me, why I literally couldn’t keep my eyes open, why every nerve ending in my entire being was firing, and why no doctor could tell me what was wrong with me. They misdiagnosed me with every single thing under the sun, tried treatments with no relief. When I say that I was desperate, it doesn’t even come close to explaining how I felt. I had to quit my job because I simply could no longer do it. My identity changed. I was no longer the hard-working, smart, funny, positive person I had worked so hard to become. I was sick. I was just so sick all the time. And I was hopeless.
Enter the Mayo Clinic and a brilliant team of doctors. It was the first time I was sure that someone was listening to me, and believed me, and was invested in figuring out what was happening and how to help me. Finally, I had a diagnosis (several actually): autonomic dysfunction (or autonomic neuropathy), including small fiber neuropathy, POTS syndrome, Stabbing (or ice pick) headache and, finally, a confirmation of severe fibromyalgia. These diagnoses explained every single symptom I had been having for more than ten years. Every. Single. One. Just having a diagnosis made all the difference. I wasn’t crazy. I was right that something was happening to my body and, finally, FINALLY, I could focus on how to get better. The only problem? There’s no quick fix for these.
Mayo Clinic referred me to their month-long Pain Rehabilitation Center to help retrain my brain and my body to live with chronic symptoms and pain, to regain my life and to understand what things I could control to help manage my symptoms. When I first arrived, I wasn’t able to walk more than 15 steps without needing to sit down, I was sleeping all day long or not sleeping at all because my skin was on fire, I was vomiting from the intensity of the pain I was feeling. The program included biofeedback training, diaphragmatic breathing training, Physical Therapy, Occupational Therapy, yoga, sleep hygiene training, life adjustment training, and education on chronic pain from some of the world’s best chronic pain researchers, doctors, nurses and therapists. This program works. I wasn’t just walking, I was ready to hike as soon as I got home to Colorado (and I did). I was sleeping 8 hours a night and staying awake all day. My memory improved. My creativity returned. My zest for life was renewed. And, my pain levels improved dramatically.
TONY: What made you decide to share your experience and become an advocate?
KELSEY: For the ten years I suffered, I felt so alone. I only wish someone had shared their experience with me about the Mayo Clinic, and the Pain Rehabilitation Center specifically, so that I could have found it sooner, so that it didn’t take so long for me to finally come out on the other end a better, more whole person – a wiser being. I want to help others find hope and answers and support too. I want them to know that they are not alone and that there is help for them—and even for their loved ones who struggle to find answers right alongside them. I met people in the program who had stories so similar to mine and arrived with all the fear and pain in the world and left with hope, for the first time in a very long time. More people deserve those same outcomes. And they deserve them sooner rather than later. I hope that sharing my story helps make that a reality for even one other person.
TONY: What do you find most rewarding about helping others?
KELSEY: When you deal with chronic illness, there are so many things that are out of your control. You do your best to use the tools that help you manage your symptoms, but some days are just difficult days. Before the Mayo Clinic, all of my days were difficult days and I had to rely on others for help, which was uncomfortable for me. Now that I’m able, it is my honor and privilege to pass that help on to others. To see the relief in people’s faces when I explain that there’s hope, to see the tears in the eyes of loved ones who finally feel like their family member might find a solution, to see someone take a full, deep, healing breath, knowing that they don’t have to face this alone…these are the biggest and best rewards.
TONY: Is there any advice you would give others wanting to share their own experience?
KELSEY: Do it! Sharing your experience is not only helpful to others but can be cathartic for you. It has helped me accept and move forward with my diagnoses – to move past the uncertainty and sadness and grief about a life that is different than what I had envisioned for myself. Illness, in all of its forms, is something we often live with silently. We don’t want to burden others, we don’t want people to feel sorry for us, we don’t want them to make assumptions about what we can and can’t do. But in sharing your experience—in your words—you get to have a voice, take back control of your story and your life. And, if you’re lucky, you’ll help other people along the way.
You can share your experience
Mayo Clinic Champions love to hear how others are sharing their experience. If you’d like to tell your story, comment below or email the Champions program, and you may be the next Champion Spotlight.