Exercising with a Chronic Disease: A SparkPeople.TV Trainer's Journey

By , SparkPeople Blogger
At SparkPeople, we're all about helping people overcome their health and wellness obstacles. Our members face many different hurdles, from eating disorders to mobility issues to simple lack of willpower. That's why we launched SparkPeople.TV: To make fitness more accessible to those facing all types of challenges.
Amanda Young, one of our SparkPeople.TV expert trainers, is no stranger to overcoming obstacles. As a social worker for 15 years, she counseled adults, children and families suffering from trauma, disabilities and mental illness. In 1997, she started teaching group fitness classes and ultimately became an elite fitness instructor in New York City, garnering awards and a feature in Time magazine—all while silently struggling with daily pain.
In 2008, Amanda was diagnosed with a rare disease called Trigeminal Neuralgia, which causes chronic pain that can sometimes be excruciating. Last year, to raise awareness and help find a cure, Young took her struggles public with her Face the Change campaign. "I'm sharing my story in an attempt to help people increase their self-awareness, develop the courage to face their fears and anxieties, boost their self-confidence and live fulfilling and productive lives," she says.
For people struggling with ongoing illnesses, Amanda says fitness isn't only possible, but essential. "I like to think of it as health more than fitness," she says. "Our body is our temple, and while we can't always control what happens, taking care of our health gives us the best shot at living a wholehearted life." Amanda's workouts have helped her better manage her disease by reducing stress levels, alleviating symptoms and boosting self-confidence.

Fitness Q&A with Amanda
  1. What's the single most important factor in sticking to an exercise schedule? "Committing to a plan. I tell my clients to put it on their calendar as though it’s a work meeting or conference call they must attend."
  2. What most excites you about health and fitness? "Empowering others to achieve their own personal health goals. I want people to feel as though it's not a chore, but something they enjoy."
  3. What's your favorite fitness or health hack? "Dry shampoo, hands down. And paper plates to use as gliders on the floor when I don’t have access to equipment."
  4. What's your favorite way to reward yourself for hard work? "Sleep. Lots of it. Rest helps me recover physically and mentally."
  5. How do you inspire yourself to exercise and eat well? "I know I’ll always feel better after exercise. I don’t limit myself by dieting, but instead, I change my eating habits. It’s a lifestyle, not a fad."
  6. What's something that people overlook when planning a weight loss journey? "I don’t believe in weight loss—I believe in health gains. We focus so much on the scale that we forget being skinny doesn’t make you healthy. Building strength, reducing body fat and having a healthy spirit are the key factors."
  7. What's your advice for people who are feeling discouraged? "Success is defined only by you. There are so many things we cannot control, but we can control how we view ourselves and our progress. It's important to find positive ways of increasing our self-esteem, being forgiving of ourselves and setting realistic expectations."
  8. What's your personal fitness routine? "For me, it's all about muscle confusion. I try to do new things I’ve never done, and especially things I’m not so fond of doing. Having a chronic illness sometimes makes it difficult to do what I’d like to do, but I listen to my body, as it tells me what I need."
  9. What's your favorite motivational quote? “Love the life you live, live the life you love.”
What's next on Amanda's agenda? She's currently flexing her entrepreneurial muscle as she starts a new business. Its mission: To help people with chronic illnesses live fulfilling lives and to find ways to take control of their physical and emotional health.

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Great job Report
Inspiring story. Report
thanks Report
Thanks! Report
Blessings! Thank you! Report
I too have chronic pain & i get medical advice from my Dr's & PT that varies from rest & recover to exercise moderately to exercise normally. It is frustrating. Report
I too have chronic pain & i get medical advice from my Dr's & PT that varies from rest & recover to exercise moderately or exercise normally. Report
I'm 56 now and have lived with chronic pain, (neuropathy and fibromyalgia) since 35. They key is fitness! Is there less pain being fit for me? Yes some but it's more the fact that being strong helps me battle like a warrior and come up victorious when the day is spent. The war is on again today and I will be strong as I battle on! Thanks for the article. Report
TY for helping to focus on the large group of us who deal with chronic pain. I've been in this unending cycle for 25 yrs. I see many on Sparks who also deal with chronic pain, who wonder how/if they can exercise. Many have the thoughts of "if I move, it's going to cause MORE pain" not realizing that it often really helps us. Report
i've had bouts with trigeminal neuralgia myself. it is a debilitating pain! I took neurotin for my pain. It worked, eventually. Report
Living through pain is not my idea of a way to live. I have gout, and for the 8 years prior to an accurate diagnosis, I had a number of small and large bouts of gout pain. Initially, I was told that the pain I was getting in my large toe was from bursitis, and I was advised to improve my diet, get exercise, and lose weight. Often, the pain was similar to a toe cramp, which I use to get when I was young, like 50+ years ago; as I got older and had to turn away from being overly sports active, the toe cramps stopped.

In spite of losing 55 lbs, overhauling my diet and generally improving my physical health, the "bursitis" continued. One day 2 years ago, after I had to cancel a cardiology appointment, my cardiologist said that he thinks I have gout, not bursitis. Finally, after 5 years, my primary physician ordered blood tests for gout, a very simple procedure. Whe the results came back positive, she finally realized that she didn't have the essential knowledge on gout, and referred me to another physician. This physician, probably senior by 10 years to my primary of 30 years, put me on medication to remove the cause of the gout, not just try to manage the sometimes excrutiating pain it caused. I now haven't had a gout episode for about 15 months.

Like many others on SparkPeople, we learn to cope with pain. The lessons I've learned on SP for the last 3 years have been invaluable in my reclaiming my health to about the level it was 20 years ago when was 45! Report

Oh my gosh! I am so very sorry to hear you have this horrible disease. But in the same instance I am so excited to find someone who has one of the same diseases I have had for almost 20 yrs. I have been a spark member for many years and been up and down the scales. Pain pills, all kinds of drugs and being in bed helped to stop me from losing weight, along with eating. I never knew how pain pills could make you hungry until I had to use them. I have Atypical TN, which means my face hurts 24/7 and I get the horrible tic pain several times a month. But the constant pain has taken a toll on me. I am now 68 yrs old, headed for 69, but sure don't feel that way. I need to lose 100 pounds now. I weight 263, and could lose more then 100. I just don't know where to start. I just wanted to let you know I think your fight along with this disease is fantastic and I for one, am so happy for you. Praying your pain is less and less. Hugs, Diane Report
What does that have to do with her overcoming pain?????
Sounds like boot camp
One of the greatest things about SparkPeople is the awesome motivation and inspiration given by others. I love that when I feel down about not losing or even when I'm happy I stayed the same, that there are videos, articles and so many other things on the site to help encourage and motivate. Thanks for this awesome article.