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Personal Story
While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.
I was born with a condition called cystic fibrosis—a genetic condition—in other words, I was kind of destined to have it. When I was born, the doctors essentially told my parents not to get too attached, since I likely wouldn’t make it. As you can imagine, that was frightening and devastating news for new parents to hear.
The doctors also told them not to try any alternative care or medicine. In their words, it just wouldn’t work. Initially my life expectancy was between 10 and 14 years old. Thankfully, my parents ignored that advice and my mom made it her full-time job to research anything and everything that could help my condition. This was just before the internet was around, so she would go to the local library every day, read journal articles, print them out, and bring them home.
Fast forward 34 years, and I’m sitting here, arguably as healthy as anyone else.
Coming to terms with my diagnosis.
On the outside, I look pretty normal. But on the inside, I have this struggle that not many people know about. When I was in my early 20s it was something I hid—only close family knew about my condition. I didn’t want to be pitied, I didn’t want to be seen as weak. Mostly, I didn’t want to be treated any differently than my peers.
Eventually, I started telling a few people about what I was going through. Sharing my experience seemed to help others cope with whatever condition they themselves were dealing with. That got me thinking that the greatest good would be for me to start telling my story. With cystic fibrosis, the only sign that most people have is a fairly constant cough. Apart from that, a lot of people struggle with gaining weight and then have issues with antibiotics, as well.
My condition also led me to become a certified nutritionist. At this point, I’ve also written two books: one on how to beat depression, which is something I used to struggle with; and the other on how to address type two diabetes with diet and exercise.
The mental impact of cystic fibrosis.
My condition is always on my mind, like a dark cloud that follows me around. And while it is an incredible burden, I’ve had to shoulder it all my life, so I don’t really know anything different.
At the end of the day, every day is an opportunity to take whatever cards we’ve been dealt and turn them into a winning hand.
I’ve always known that the next five years could be my last five years which puts a terrible strain on a person, but it also acts as motivation to live my life to the fullest. It makes it easier to wake up and be grateful that I have food on my plate, shelter over my head, and that I have loved ones around me.
A combination of sauna and ice bath has helped me the most in managing my symptoms. The sauna in particular has helped a massive amount, but adding the ice baths has helped me both physically and mentally. Purposely putting myself in quite a bit of discomfort may seem strange, but I think that choosing to do it myself provides a sense of empowerment. Also, choosing to doing something that makes you uncomfortable, makes you much more resilient to elements that are out of your control.
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I initially bought a sauna online, sight unseen, and fell in love with it. I’ve gone into the sauna every day since and I really enjoy the mental and physical health benefits that I get from it. I then realized that I loved going from really hot temperatures to then plunging into a pool—especially in the winter. So, to supercharge the effects of the sauna, I started getting into the ice bath. I don’t know if anyone actually enjoys doing an ice bath, but afterwards I love that sense of achievement and power that I have over my discomfort.
As for how I manage my symptoms, I knew that over time there would be something out there that I would respond well to. My medication has probably effectively doubled my life expectancy, but apart from that, surfing has been really helpful for me. The saltwater also helps to lubricate my lungs, which is important with my condition.
Keeping a good diet and exercise routine has also been helpful. I would say 50% of treating a chronic illness is personalized, but the other 50% are factors that would be helpful for anyone’s lifestyle: i.e. not eating too much sugar, managing stress, staying hydrated, and exercising regularly.
My advice to other people with cystic fibrosis.
There are a lot of people who are seriously impacted by cystic fibrosis—especially kids. I was relatively lucky that it didn’t affect me too much as a child, but it breaks my heart that people are given a diagnosis at zero, and forced to fight every day after. My biggest advice to other people with CF is that they shouldn’t feel the need to be strong every minute of every hour of every day.
That being said, your mindset is everything. My mum never wanted me to know about the condition—she thought if I did, I would start researching it, seeing what my life expectancy was, and that I might play into that. If your mindset isn’t supportive of health, that’s just an extra thing you have to persevere through.
At the end of the day, every day is an opportunity to take whatever cards we’ve been dealt and turn them into a winning hand. If you’re given bad luck, then it’s incredibly easy to play the victim, but it’s not helpful to do that—your attention is better spent elsewhere. Part of the fight is realizing that you have a choice in how you react to challenges, and then choosing to reach in the most positive way possible.
In a weird way, that means that your chances of survival are so much higher. You’ve turned a bad hand into a good one.
https://www.mindbodygreen.com/articles/jono-james-invisible-illness