Ryan Gurnett landed a string of data entry and customer service jobs after college, and the hot flashes, queasy stomach and extreme fatigue he struggled with since high school intensified.
Pain came and went in various parts of his body. He started to fall asleep on drives to and from work. By the time he hit 30, it wasn’t a matter of if he would have to stop working, but when.
Gurnett has been tested for lupus and multiple sclerosis – he has family members with both – and eventually was diagnosed with fibromyalgia in 2007. Testing also has shown he has mitochondrial myopathy, a muscle condition.
"I kind of went about doing things the best that I could. I knew I was limited," he said. "I knew I didn't have as much energy as other people but I kept trolling along."
Gurnett, 35, stopped working 4½ years ago. He lives with his wife, Kelly, a legal secretary, and his parents in Hamburg. He counts himself among younger adults in Western New York who struggle with “invisible” illnesses that most often strike those who are older. They don’t look sick – and often face scorn when others watch them leave a parked vehicle in a handicapped spot, or learn they’re on public assistance.
“The really hard part is some people will look at me and say, ‘You’re pretending to be sick.’ I think it’s the exact opposite. I’m pretending to be well,” said Gurnett, co-leader of the “Invisible” Illness Game Night Meetup Group, open to those ages 18 to 45 with chronic illnesses.
The group gathers from 6 to 9 p.m. the first Saturday of each month at the Comfort Zone Cafe, 17 Main St., Hamburg, and the third Saturday of each month at Denny’s, 4610 Genesee St., Cheektowaga. Those interested in joining can visit meetup.com/InvisibleIllnessGameNight or call 880-0404.
Many group members have the same two conditions as Gurnett. Others have chronic fatigue syndrome, MS, lupus, thyroid disorders and Crohn's disease. "A couple people have had Lyme disease," Gurnett said. "One of our members has had cancer. We're open to any physical condition that can be caused by your body chemistry or if your back's messed up because of a car accident. It doesn't matter how you got it, just that this is what you're dealing with. We have a lot of people in the group that have a long list of foods they can't eat. I've got to stay away from dairy."
Why do they call their conditions "invisible illnesses?"
"I don't look sick and that's part of my struggle," he said. "If you walked in and had a back brace, you'd know what's wrong with me but this way you don't. When I use a handicapped placard at Tops, I get laser stares at me. Sometimes I need to use the little scooter. I look like an alien to some people. Even going into a judge for disability, if I had a brace or wheelchair, or something like cancer, you'd know something was wrong. The judge asked me what having fibromyalgia was like when I was in court and one of the thoughts that ran through my head was, 'If I had cancer, you wouldn't ask me what it's like?'
"A lot of people think that you're faking, or you're lazy. Everyone in the group has been called lazy by someone, even doctors."
Gurnett and others spoke recently about what their lives are like and how meaningful game nights have become. For the three or so hours they're together twice a month, everybody empathizes with their illnesses. Nobody cares if someone came in their pajamas or has to leave early because they don't feel well. If they're too sick to come at all, fellow group members wish them well and pass along word they hope to see them next time.
"There's a lot of talk about guilt, about feeling sick and being a burden," Gurnett said. "We talk about doctors" and other health specialists. "We don't go in with a certain topic. It's whatever people want to talk about. I try not to steer the conversation and let it flow naturally."
Some in the group said they have attended group meetings for the conditions they struggle with but quickly lost interest because members were over 60 and the tone was too depressing.
Instead, as they talk, group members lose themselves in their games, which they describe as mostly modern role-playing and strategy games.
"When I started the group, I told some of my friends and they said, 'Oh, it's a bunch of sick people playing Battleship?' I don't want it to turn into that," Gurnett said. "I like more modern games and I think learning a game and talking it out with people is a great way to exercise your mind. I came in with awful social anxiety, so for me explaining board games to people was a way to avoid that. With board games, I know what I'm doing. Ticket to Ride is a popular one. There's one called Sushi Go, a card game. We try to keep them simple, not one with 20 pages of rules."
Although they are young, group members generally see more than one doctor and take more than one prescription medication. Several complained that those who have improperly used prescription opioids have made it harder to consistently get their medications – and that their co-pays have climbed because they can only buy enough painkillers to last a few days.
Here's what several members said about their lives.
Crystal Fudalik, 36, of the Town of Tonawanda
Fudalik was a special education teacher and then in administration at a human resources agency before her frequent sick days led to the loss of her job. It took her several years to start getting disability payments, she said.
"So many people ducked out of my life," Fudalik said. "I have a long list of issues and I'm still trying to get answers. I have fibromyalgia. I have arthritis. I have malaise and migraines and tendonitis. I have unexplained tremors. After many years, I'm still battling to find out what's wrong so I can get appropriate treatment. I have a neurologist. A rheumatologist. A pain management specialist. A chiropractor. A podiatrist.
"You're constantly having to prove that you're still disabled with a diagnosis of fibromyalgia...," she said. "Even the people who mean well who do believe you sometimes say offensive stuff like, 'At least you don't look like you're sick.' Or when you say you have an incurable illness and they ask, 'When are you going to get better?' And you say, 'I don't think that's happening.' And then all of a sudden you're being negative and that's the reason you're not feeling better.
"They ask, 'Have you tried yoga? Gluten-free? Acupuncture?' I have tried everything. This is my health. I care about it. If they find out you're on an opioid medication, you also feel judged, and it's been harder to get the medications we need."
It's also hard to keep friends. About three years ago, she put a post on Craigslist saying, "I have fibromyalgia. I'm home all day. I'm looking for new friends, people who understand."
Gurnett answered her.
"This group can be great because it can be the only time someone gets out…," Fudalik said.
Christy Kassler, 29, of the Town of Tonawanda
Kassler helped start the group. She, too, has been diagnosed with mitochondrial myopathy.
"It takes a while for everyone to figure out what they have," she said. "Everyone thinks you're lazy. Everyone thinks you're out to cheat the system. I was 25 when I got sick and up to then I'd been perfectly healthy. I had mono twice in the same year. Nobody believed me the second time."
One by one, doctors gave up on finding the source of her pain, she said, until Dr. Julian Ambrus Jr. diagnosed her. She has filed for Social Security disability.
Aubrey Pitzi, 34, of Williamsville
Pitzi grew up in Philadelphia, then landed good jobs in Albany and, two years ago, Western New York. She hasn't felt completely well since suffering a bad flu in her early 20s. She, too, has been diagnosed with fibromyalgia. Her struggles worsened two years ago and she almost had to quit her management job with a regional insurance company. Instead, her bosses agreed to bump down her hours. She goes into the office once or twice a week, and works from home when her pain worsens. "Without the accommodations my employer made, there's no way I'd be able to work," she said. "I don't think I realize how much of my illness I hide from most people."
Jennifer Offhaus, 39, of Lackawanna
Offhaus is a more recent arrival to the group. She worked as an executive assistant to a CEO in Boston before moving back home from New England about 13 years ago. She was badly hurt in a car crash shortly after her return.
"I have a fusion in my neck and disc replacements in my back," Offhaus said. "Now the disc replacements are doing OK but I have nerve damage. The discs above and below my fusions are blowing out and I have a disc and bone behind it touching my spinal cord. I have lots of nerve damage in my arms. I have fibromyalgia. Sometimes when I touch my arms if feels like somebody's stabbing me. Sometimes noises register as pains instead of sound…
"You have the nonbelievers, people who only see you on good days," Offhaus said. "You're not going to function on the days you're having trouble. They only see you on days where you can get up, get out of bed and take a shower. People who have to deal with you – your family – are already negative and people who don't have to deal with you are cutting you out. When people ask, 'What is it you can do?,' you say, 'I really don't know. It depends on the day.'"
The crash continues to haunt Offhaus, she said.
"People who have anxiety and post-traumatic stress also have injuries," she said. "It's a legitimate combination."
Twitter: @BNrefresh, @ScottBScanlon