By Scott Diffenderfer, as told to Jennifer Clopton
We don’t usually hear much about gout, so you may think it’s uncommon – a thing of the past, a condition you read about in stories set in medieval times. In fact, though, about 8 million people in the U.S. have it.
I’m one of them.
In the past, I never really thought about gout because I never heard anyone talk about it. It’s not until I got it myself, and began to tell people what was wrong with me, that I found out how many people know someone who has it.
Gout is a type of arthritis prompted by a build-up of uric acid that causes needle-like uric acid crystals to form in your joints and other parts of your body. Your body produces uric acid when it breaks down purines, which are found in your body and are concentrated in foods like organ meats, seafood, and alcoholic beverages. But purines occur in all foods, and different foods seem to trigger gout in different people. I still have not determined what foods trigger my gout attacks.
Because gout is perceived as being a disease that affects overweight people and is often triggered by food choices, there is a perception that gout is a self-inflicted condition resulting from a decadent and unhealthy lifestyle. But research is showing that genes may play an much bigger role than food – and our DNA is perhaps the thing we have the least control over. Still, the stigma persists. Most people who have it don’t talk about it, and those who don't are often unaware that the condition even exists.
I knew nothing about gout when I had my first attack almost 7 years ago.
I was out with my cousin, enjoying a delicious Spanish dinner of duck, lamb and red wine and my foot started swelling up during dinner. By the time we were finished, my left foot was 1.5 times its normal size and throbbing with pain that worsened by the minute. It turned bright red with white spots all over it, gave off a ton of heat, and I was barely able to hobble home and fall into bed.
As I lay in the bed, the pain worsening by the minute, a quick online search led me to information about gout, and I realized that I was having an attack. I was able to see my doctor the first thing in the morning and was diagnosed as soon as he saw me. He gave me medicine that calmed the swelling and pain almost immediately, and while I was left with what looks like a bunion on one of my joints, I was optimistic because I knew what to do if it happened again.
Only, the next time I got an attack – a year later as I enjoyed some good food and drinks on a cruise – the medicine that had worked the first time, didn’t help. I had to wait for the pain and swelling to pass on its own, and that took several miserable days.
The next attack happened while I was vacationing in Hawaii, even though I was staying active and eating healthy food. I have never been overweight, but since being diagnosed with gout I have become an especially healthy eater. I limit my alcohol, am active and exercise and am very healthy in general. I’ve even lost a little weight as a result. But I’ve tested high for uric acid levels, and my doctor thinks I’m just genetically predisposed to be this way.
I continued to average about one to two attacks a year until 2018, when I had several. The three worst, most painful flares lasted a total of 6 weeks and happened with no rhyme, reason or obvious trigger. In all of those cases, my eating and drinking habits were good, and I was even on medicine to lower my uric acid levels. Most frustrating of all, the medicine had lowered my uric acid levels to the low end of normal, and my uric acid levels even tested low during the attacks.
You can start feeling desperate in those moments when you are in so much pain and wondering when the attack will stop and if it’s going to get worse before it gets better. There is uncertainty in not knowing when the next flare will strike and great disappointment each time you try a treatment and it doesn’t work, which has happened to me a lot.
So I’ve made a decision. I can obsess, worry, and fear about all these things I can’t control or I can focus on what I CAN do. I’ve decided that’s a better choice for me. While physically I’m nowhere near being on the other side of this and I certainly don’t have all the answers, I do know that mentally and emotionally I’m in a better place because I’m talking honestly about what it looks like in my life.
I think this is important because gout does affect men more than women and as a gender we are less inclined to share the hard things in our life and expose ourselves as vulnerable. But sharing our stories is one way we can heal. This has opened me up to help others and learn from others who can help me.
It’s also made me more aware of the blessings in disguise that have come with this diagnosis. In addition to making me a healthier, more mindful eater – especially less meat and alcohol - and reminding me to be as active as possible, it’s helped me focus on the positive in my life. While gout isn’t curable, it also isn’t deadly. So instead of worrying about if and when I’m going to have another attack, I work hard to train my mind to focus on the present and that has re-wired me to be especially grateful for all the good around me every day.
At its core, my philosophy now is that I want to live out loud with my gout. That means I’m not ashamed about it. I don’t feel it’s something to hide and I think there’s actually so much to be gained by saying that. I’m doing the best I can with a challenging diagnosis, and I’m not afraid to talk about it. I think that helps me, and I really hope it helps others living with gout, too.
Scott Diffenderfer is a Realtor© for Compass and a community activist in his hometown of Miami Beach. He is president of the Belle Isle Residents Association is on the Residential Board of Governors for the Miami Realtor Association of Realtors and sits on the Resiliency Communications Committee for the City of Miami Beach. You can follow him on Instagram @belleislerealtor.