Board of Directors
Tabitha Thompson-Board Chair
There were a handful of years when only my immediate family knew I had been diagnosed with lupus. I just didn’t want people to treat me differently. I didn’t want every conversation to start with the earnest yet pity-filled “How ARE you?” when people look deeply into your eyes to show their concern, instead of a normally flippant “Hey, how are ya?” that doesn’t require a meaningful answer.
Besides, personally, I was elated, in a weird way, to have the diagnosis. It meant I wasn’t crazy or lazy or a hypochondriac. It meant there was a reason that I felt crappy and too tired to move and got sick so easily all the time. And it meant that there was something I could do to treat it.
It’s not that receiving support and love from extended family members wasn’t important to me; it’s just that I didn’t want lupus to be the main topic of every conversation I had with every person I met up with that hadn’t seen me for more than a week.
Everything changed, though, when my mom saw a billboard announcing the Walk for Lupus.
I sat down with the phone and called every family member and close friend I had. Suddenly, having to say, “So, a few years ago I was diagnosed with lupus ...” didn’t have to be followed by their earnest yet pity-filled response. I got to go on. “… and the Lupus Foundation is having a fundraising walk and I’d like to invite you to walk with me.”
Suddenly, telling about my lupus was empowering. There was a point to it. People didn’t just have to wail in despair for my health, they could show up and support me.
And, I think, hearing the diagnosis in connection to the Walk for Lupus was empowering for them, too. Let’s be honest, what do you say when someone you love is given a rough health diagnosis that you probably don’t understand? But to be invited to walk for them was easier to respond to, an easier answer to give: I am here for you. I’ll walk with you.
People came, fundraised, and also learned about the disease all the while feeling the power that comes from doing something to help.
That was more than a decade ago now, but I still love what the Walk for Lupus does. I still meet new people every year, some reeling from a new diagnosis, yet shored up by the camaraderie they find at the walk. They look around and feel the love and support of the hundreds around them, knowing they and their families aren’t alone in their fight and in their desire to help, and empowered by the knowledge that they can do more for their loved one than simply ask, “How ARE you?” Even if, just once a year, they walk around the park with them.
Feli Anne Hipol-Board Vice Chair
Opportunities were falling into my lap as I was getting ready to graduate from high school. I got into a college in California, which was my top choice in places to go to college, and I had a full ride scholarship, plus room and board. What more could I ask for?
Right away I thought I wanted to be a nursing major, when my passion was writing, but I had a family friend who was the head nurse of a major hospital in San Francisco. I figured I would work that connection after I got my nursing degree, but an obstacle came my way and my plan changed. In spring of 2004, I was diagnosed with lupus. Needless to say, being a nursing major was a stressful path and triggered my first lupus flare. My father has lupus, so they tested me for it and sure enough, that was my diagnosis. It was good that they figured it out sooner rather than later, but I was in denial, as all young adults are when diagnosed with a chronic illness. I did not want to accept the fact that I had to take medications for the rest of my life and limit my social activities. I was embarrassed to tell people that I was sick, and thought to myself, “This is temporary; I will get off these meds someday.” I transferred to Westminster College so that my family could help me take care of myself and the doctors could observe how and if the medications worked.
I moved back to Utah, and I had two more flare ups, which landed me in the hospital for almost a month each time, and I’ve taken a total of two and a half years of leave of absences from school because of those flare-ups.
It definitely hasn’t been a walk in the park, but I’m a strong and resilient woman. I received my B.A. in Communications-'09 and my MPH(Master in Public Health)-'12. I plan on working in the public health field for a couple years, then go back for my doctorate degree.
In 2008, I started volunteering at the Lupus Foundation and it has been such a fulfilling experience. My understanding of lupus was unclear before I started volunteering. It challenged me to learn more about lupus because I want to promote public awareness and help people understand this disease. The Lupus Foundation of America, Utah Chapter, has helped me come to the realization that I have lupus, but it is manageable, and if you keep a positive attitude and positive people around you, you can achieve anything.
Victoria Loveless-Board Secretary
I found the Lupus Foundation of America, Utah Chapter in 2011 during my junior year of college. I was looking for ways to become more involved with the community and decided to start where my heart could empathize-- lupus.
My initial introduction with lupus was my sophomore year of High School. This was a fairly painful time, both physically and mentally. As a fifteen-year-old teenager, I was diagnosed with rheumatoid arthritis and tested repeatedly for lupus. I remember feeling a large amount of frustration, as my peers were able to excel in all of the things I longed so much to do and I was constantly in a doctor's office awaiting another round of testing. No one in high school wants to be treated differently, and I tried desperately to hide the limping, pain and depression that so often accompanies this cruel and mysterious disease. So many times in my teenage years and early twenties I wondered, "Why this was happening to me?" It wasn't until I finally accepted my situation that I could start turning lupus into a strength, rather than the looming struggle it had always been.
That is when I decided I wanted to volunteer for the Lupus Foundation here in Utah. Since then, a lot of my strength has been found through the hearts of those at the Lupus Foundation. From the very first day as a volunteer, I felt a sense of normalcy. A group of real people who had experienced all the things that I could never quite understand myself actually existed and I felt an instant connection with them. Being a part of such an amazing organization has helped me see the bigger picture, it has given me the chance feel optimistic in a world that has been and could easily still be filled with self-pity.
As time has progressed, members of the foundation and the people who support it are dearest to me-- heroic even. I feel a sense of admiration that is hard to explain and easiest to feel when I am around them. While lupus will always be a struggle in my life, finding those who I can confide in helps lighten the burden that accompanies it. I would encourage anyone who has been affected by lupus or would like to become involved with this amazing group, to come in or participate in one of one of our events. I wish I would have found them so much earlier in my life.