An Interview With Personal Trainer and AS Patient, John Frazier

Here at AxialSpondyloarthritis.net, we know that fitness and AxSpa can have a complicated relationship. Exercise is important to reduce stiffness and maintain mobility, but it can be difficult to commit to when coping with pain and fatigue.

We recently connected with John Frazier, a personal trainer who lives with ankylosing spondylitis. John has been in the fitness industry as a trainer for over 30 years. He also recently wrote a book titled Through The Pain: The Silent Suffering & Triumph of a Personal Trainer. You can purchase his book here.

Read on below for our interview with John.

AxSpa.net: Could you tell us a little bit about your AS symptoms and the process of getting diagnosed?

John Frazier: I have had symptoms as far back as high school. I played sports but always had to wear a back brace. The pain was mainly on my lower left side. I was told it was growing pain. As I got into my 20s, I was working as a personal trainer and working out really hard. By my mid-20s my back seemed to be "going out" every week.

The physical therapist discovered that my lower lymph nodes were very swollen and that was the start of trying to find out what was going on. I was also having a lot of intestinal issues and not able to eat much-gut issues are really common with AS.

I went to doctor after doctor, running all kinds of tests but couldn't find anything wrong. It was suggested that it could be all in my head (something everybody loves to hear). Finally, a doctor friend of mine wanted to see me walk and noticed something in my gate and referred me to a doctor friend of his and through blood work and X-rays and a physical exam they were able to make the diagnosis. It took about six to eight months to get the diagnosis.

AxSpa.net: How has fitness played a role in your life?

JF: Being a personal trainer, I know the importance of physical fitness. Early on, there were no biologics but they wanted to try different drugs on me to see how I would do.

I didn't like being used as a guinea pig so I decided that I would use a holistic approach. Exercise, stretching, massage, acupuncture, diet and whatever else I could find. It worked for me for years. But AS is a progressive disease and the last three to four years it has progressed quite a bit. I started on a biologic about a year and a half ago which has helped a lot. But I still do all the other holistic stuff because it really does help.

How did AS symptoms and your AS diagnosis change your approach to fitness?

JF: I immediately stopped lifting heavy weights and started doing more cardio and stretching. I couldn't just dive into doing an activity. I needed to warm-up more and stretch more. At first, I only had to give up lifting heavy but over time I had to stop jogging, and eventually had to stop playing basketball (which I loved) and stop doing certain exercises that no longer worked for me. I can still workout, I just have to be very careful in what I do.

If you could give advice to someone who is living with symptoms but interested in starting a fitness program, what would you tell them?

JF: First thing first, go to your doctor and get cleared to exercise. Everybody is going to be starting from a different place. Anyone with a disability like AS should hire a very good personal trainer. I would try to find someone who has experience working with people with disabilities. This is very important.

Stretching should be a top priority in your routine. Start out slow. Find exercises that work for you. Realize that there will be some discomfort. Most people think they shouldn't feel any pain when exercising and if they do, they should stop immediately. Anyone with AS will tell you there is pain, all the time. You just have to recognize the difference between normal pain and pain that is detrimental and can really injury you. That's what an experienced trainer can help you with.

And lastly, know that it's not going to be perfect. You might be very consistent for weeks and weeks, and then you have a flare-up and can't work out for a week. It will be frustrating but get back to exercise as soon as you can. It will sometimes feel like "one foot forward and two steps backwards, but you just have to keep going.

What inspired you to write a book, and how did you get it published?

JF: I got inspired when the pandemic hit. We were all locked away in our homes and I had no work. I had just celebrated my 30th year being a personal trainer and I felt like I had something to say. Most of my life if I tell someone I have this disease, people would just look at me confused, because I didn't look like I had a disease. I wondered how many others felt that way.

The subtitle of my book is "The silent suffering & triumph of a personal trainer." The silent suffering is what I think a lot of people experience, whether it be physical or mental. I wanted to address that in my book. The triumph part is the fact that I found a way to live a good life even though there is no cure for the disease.

Now getting published was tricky. I had no idea how to do any of it. I would google everything. When it came time to publish the book, I google it. I read all the different ways and decided on Amazon. I didn't want to wait for the possibility that a publishing company would publish it. They get thousands and thousands of book submissions. It could take years to get published or more likely never.

Amazon wasn't the most user friendly and there is no tech support. There were a lot of formatting issues and sizing issues for the book cover. It took a while to get it published and I had to go back many times to fix problems with it but with a lot of patience and persistence I eventually got it done. I recently got my book published with Barnes & Noble. (In order for them to sell it, there has to be a different bar code.) It was very similar to Amazon, but I found it much easier. It could be because I had experience with Amazon, and it made the process easier. But like anything if you work hard enough you can make it happen.

Thank you John!

Thank you John for sharing your story with us. If any readers have additional questions, you can email John at frazfit@sbcglobal.net, or visit his website Frazier Fitness Consulting.