“I think it may be time to bring my story of RA into my blog and my writing. It feels like the time has come to start embracing that saga.” – @austingunter
Austin Gunter is the Brand Ambassador for WP Engine, a startup providing fast WordPress Hosting.
This is an updated version of the post “Coming Clean” that I wrote on my home blog earlier this year. It all started with my impulse to start tweeting about having Rheumatoid Arthritis, turned into the blog on my home site, and then the Arthritis Foundation picked it up and traffic to my blog went up 10x in an afternoon with folks who related with my story, and had their own to share as well. I didn’t expect the world to respond to my story of having Rheumatoid Arthritis since I was 13, but they did. Hopefully by sharing this with the Good Men Project Audience, my story will find more men who need to relate.
In January this year, I shared something about my childhood on Twitter that I’ve never shared before. It’s an important part of my life story, something that defines me, but I had done by best to keep it quiet in the past.
At the time, I was running my own copywriting business, and I was looking for health care solutions for freelancers. I decided that I probably wasn’t the only person in Austin, TX with a life story that involved chronic illness, so I asked on Twitter. I might be the only one who had Juvenile Rheumatoid Arthritis at age 13, but I’m sure that the city is full of people who have survived challenges in the past, and who had found solutions to get them through.
I wasn’t born with rheumatoid arthritis. When I was 13, I was normal and healthy, played football, loved it, all that stuff. Then I started getting these really weird fevers and joint pain all over my body. I had to stop playing sports and going to school. Within a few months, the fevers were spiking at 103 Degrees every day, and the joint pain was keeping me from walking around much. I was about 5’10″ but I dropped down to about 120 lbs and nearly died in the hospital from complications that winter.
After six months of tracking my condition down with every medical test known to man, by diagnosis of elimination, they said I had Juvenile Rheumatoid Arthritis. This meant that my immune system had turned against my body and was attacking my joint and connective tissue. My case was very aggressive, and I don’t have a joint in my body that hasn’t suffered significant cartilage loss. People notice that I don’t quite turn my head too look at them, I turn my whole body. Things don’t quite bend as well as they ought to, and certain movements, normal for other people, can be painful for me.
With various treatments, things got better, and by the time I was 15, instead of playing football, I was on the swim team, but I felt healthy and lived a pretty normal life. Then my hips stopped working over Christmas break 2001, and I spent the next 18 months not walking. All the cartilage in my hips had degenerated, so they were painful and bone on bone. I kept up with all my classes through this great program the school district had to send a teacher around to collect all my assignments and visit me twice a week to teach me the math I couldn’t figure out on my own.
In the summer of 2003 finally found a good orthopedic surgeon, Dr. Greenway, who replaced both of my hips with ceramic replacements in one six-hour operation that June.
I remember waking up thinking this is exactly like it looks in a movie with bright fluorescent lights gradually coming into focus, hearing a nurse say, “He’s coming to, go ahead and call the parents.”
They wheeled me into a room, and the next day a physical therapist strapped a belt around my waist, pulled me up out of bed and made me stand up. I still had the epidural and catheter attached, and I couldn’t feel my legs, but they were going to get me walking again. The next day, I took my first steps with fake hips.
After 2 weeks of hospital Physical Therapy, they sent me home where I had a new lease on life. You see, before the surgery walking with bone-on-bone hips was incredibly painful. The ceramic replacement hips took all that pain away for the first time in more than a year. Learning how to walk again was easy just because I wasn’t in pain any more. Before the surgery, I couldn’t even get out of bed on my own.
I went back to high school for my Junior year and took a 3/4 course load. I would come home after school, put on a movie and take long naps. My body took about 2 years to fully recover from that surgery. I still have 7-inch scars along the outside of my legs.
Paying for college was a major concern for my family. We had good insurance, so my medical bills didn’t cause problems, but paying for college was going to be a big issue like it is for most middle-class families in America these days. Making matters more challenging, I wanted to go to the very private St. Edward’s in South Austin, since it was a smaller campus and had a Rhetoric program I wanted to join. Paying for college somehow worked out between my SAT scores (1380) and my various scholarships. Those scholarships made it possible for me to graduate debt-free, and I’ll always be grateful to folks like George Kozmetsky for their grants and scholarships that put me through school when I wouldn’t have been able to manage a job on top of my classwork and rheumatoid arthritis.
There were plenty of mornings that I couldn’t get out of bed because of the pain I was in, but I wouldn’t have traded it for anything. In order to make things easier on me, I rode around campus on a Segway. The State of Texas wanted to buy me a HoverRound, but I knew that would doom me to 4 years of celibacy in college. The Segway made it easier for me to get dates. I just made it part of my schtick, thinking, If you can’t fix it, feature it. The Segway did star in several first dates, and I became known for better or worse around campus as “The Segway Guy.”
I’ve never made a point of sharing Rheumatoid Arthritis publicly mostly because I didn’t want to burden people with it. Those of you who have had a chronic or debilitating illness know how differently people can treat you when they know you’re in pain. I don’t want people to be on edge when they’re around me. There are other things to be worried about, and I think everyone has their own pain to focus on. I can handle my own as well as anyone else can.
I think this weekend I realized that I knew who I was apart from the illness, and I didn’t have to worry about anyone else getting confused about my identity. I’m Austin the Writer, Austin the Connector, Austin the Extravert, and now people will know that I’m also Austin who has Rheumatoid Arthritis. There is something freeing about being candid and vulnerable, especially about the pain you’re in.
The question of health insurance still remains. I have great coverage now that I’m working at WP Engine. However, if there were ever coverage gaps, it would be an interesting challenge to fight a health insurance company in order to get back on their rolls. I suppose anyone with a chronic illness represents a drain on their profits. Even though I work very hard to focus my diet and to keep my body in good condition with Tai Chi, it’s an expensive proposition to pay for the biologic injection I give myself every night before bed. I’ve had great success in treating my own condition with diet and exercise, but I still need really awesome (pricey) medicine to function at a high level to produce at a startup day in and day out. Without the medication, the inflammation usually comes back within 48 hours like it’s just been waiting for an opportunity to confine me to my bed. That is gradually changing, and I have high hopes about healing. I’m working with several specialists and experimenting with some new technology that has already produced amazing results. If you’re curious about what I’m doing to treat this, please leave a note in the comments. For now it’s a daily process, and I’m in better health than I was last year and the year before that. There is a lot to be thankful for.
For my own sake, I’m making public acknowledgement of this in a very public blog. It’s healing for me to write about it and then put it out there to be read publicly. I think that the upside of sharing it outweighs any potential downside. I’m always afraid of sharing things this vulnerably, but I find that it always works out in the end. Austin, the city, is a forgiving place that allows individuals to be themselves. And the nature of blogging has made it possible for all of us to be genuine and flawed human beings one moment, and to evolve again in an instant because we always have an opportunity to change our status a few minutes later to reflect the next iteration of our identities. In that way, Facebook and Twitter do allow us to be more human more publicly than we ever have in the past. They allow us to be genuinely flawed like never before. I’m grateful for that.
I’m not sure where things go from here. I love being able to share my story with people, and there is more to it than this. It would be cool to hear from other people who have a similar struggle in their own lives. I’m open to answering questions or having coffee or lunch to talk about it, especially if you are just getting started with your own battle for health. Certainly I am also actively looking for ways to heal myself. Modern medicine usually says that repairing cartilage is impossible for them, but I think it’s possible.
As for health insurance, it’s a bloated industry, and I can’t wait to see a startup revolutionize how we pay for care and make it affordable again. I think someday it would be amazing to start a non-profit for kids like me who have Juvenile Rheumatoid Arthritis. We’d provide resources for their whole family to cope with the challenges and pain their children face on a daily basis, just like I did. The emotional and identity issues are as painful as the purely medical ones, but there is a great deal of hope and support to be found in the community.
Thanks for reading this far and sharing this part of my story with me. The world is ready to hear yours as well. Don’t hold it back.
I hope this helps.
Austin W. Gunter
PS: You can read all of the tweets here.
Top photo by PhotoCo./Flickr.