Christele Felix had big dreams when, at age 18, she moved with her family to Queens, NY, from her native Haiti. About to enter York College, she was excited not only to pursue a biology major but also pumped about extracurriculars. “I’d been really into sports throughout high school, and I’d always wanted to join a basketball team in college.”
However, the sudden onset of mysterious symptoms threw her off course. Christele started having a lot of swelling in her hands, so basketball practice was out of the question. As for her usual boundless energy? Gone. “I was always tired. I remember I had classes on Tuesday and Thursday that would end at 11 in the morning, and afterward I would run home and sleep all day.”
Christele shrugged off the symptoms, thinking maybe the cold had something to do with it. After all, her family moved to New York during the cold month of December, which was quite an adjustment from the warmth of Haiti. “I was 18; I wasn’t responsible,” reflects Christele, 34, a New York-based clinical researcher. “I didn’t pay attention to it until my dad told me to get it checked out, so I went to the ER.”
“I Didn’t Know to Be Worried”
That’s how she learned she had lupus, a chronic autoimmune disease that can cause pain and inflammation throughout the body. “I had never heard of the disease at that point,” says Christele, who is now the Chief Operating Officer of LupusChat.org, an advocacy group that brings together the lupus community and health care professionals. “I wasn’t worried — I didn’t know to be worried. I said, ‘OK, no problem; just give me my medication so I can move on with my life.’ It took a while for me to come to terms with it all, and for my body to figure it out as well.”
Still in her first semester of college, Christele was overcome by an onslaught of lupus-related issues that sent her in and out of the hospital — fluid around her lungs, fluid around her heart, excruciating pain in her kidney area.
Less than a year after her diagnosis, she had a major flare that kept her in the hospital for months. “I lost a lot of weight; I had to take two semesters off,” says Christele, who endured two rounds of Cytoxan, a powerful immunosuppressant, to treat lupus-related kidney complications. “It’s a very heavy, hard medication. It has possible infertility risks, but it helped a lot. It literally saved me. Once I started getting more stable, my kidneys improved.”
Happily, Christele rebounded enough that her dream of joining a college sports team came into reach: Although basketball wasn’t meant to be, “York launched its very first women’s soccer team, and I was able to be a part of that for two seasons,” says Christele, who also played in an indoor soccer league after graduation.
“I Partnered with My Rheum”
One of the bright spots in Christele’s journey has been her rheumatologist, who was assigned to her during one of her earliest ER visits. “It worked out great,” says Christele. “I realized later how lucky I am to have met her, and I’m still with her.”
Working closely with her rheumatologist, Christele tried a number of treatments, such as prednisone and Cellcept (mycophenolate mofetil), and even joined two different clinical trials, something she feels strongly about. “The experiences of Black patients need to be taken into account as researchers try to develop treatments that work for us,” she explains. “It’s also important for Black patients to participate in clinical trials because it gives us earlier access to high-quality, cutting-edge care.”
“Advocacy Means a Lot to Me”
Christele admits that it took a long time for her to accept her diagnosis. “I went through a very long period of denial,” she says. “When I felt better, I’d pretend the whole thing didn’t exist. I remember one time, I stopped going to my doctor, I stopped taking my meds, and I ended up in the ER. That’s when my doctor said, ‘You can’t really run away from this.’”
Today, rather than running from lupus, Christele embraces the mission of helping others with the disease through her commitment to LupusChat.org. “Our most important goal is to provide a space for patients, researchers, and clinicians to have a conversation together — for patients to have good sources and for clinicians and researchers to hear from patients what we want from our caregivers,” says Christele, who co-hosts chats every other Sunday on Twitter (#LupusChat) at 3 pm EST.
And she’s grateful for the treatments that are taming her lupus. Benlysta (belimumab), Plaquenil (hydroxychloroquine), and prednisone (mostly for adrenal insufficiency) seem to be the magic formula these days: “I’m stable now,” says Christele. “My doctor tells me all the time that this is the best I’ve ever been based on my bloodwork and how I feel.”
In fact, for the first time, she’s able to hold down a full-time job. She hangs out with friends —watching soccer games is a passion (she’s still a little disappointed Brazil didn’t win the World Cup) — and unwinds at home with family, doing jigsaw puzzles and reading.
So how is she managing her lupus now? She’s living with it, she says, but “it’s not stopping me from marching toward my goals.”
Christele’s Advice on Managing Lupus
Christele shares more insights on how she manages lupus, and hopes one of her strategies can help you, too.
Join a support group — when you’re ready
“It took a really long time for me to join a support group. At first, I would go to the monthly meetings and sit at the back. I would hear people talking about their experiences. And then, little by little, I would talk. It made it easier to find the right words and find the confidence to speak up.
Discuss goals with your rheum
“One of the great things between me and my doctor is that, yes, we look at the bloodwork and my protein numbers, but the main thing is she knows the specific reasons I want to get better. For example, she knows I’m interested in advocacy and that it’s important I’m able to do that. She knows I want to travel. Discussing these concrete goals makes the partnership better, and it makes it easier for me to do my part even when I don’t feel like it.”
Listen to your body
“If I feel like today is a day where I can’t do a lot, then I don’t. I kind of go along with the amount of energy I have versus the number of tasks that I have.
On days where I have the energy, I use it. One thing I’ve learned is when I push myself too much, it takes me a longer time to recover. I also take as many naps as I need to and make sure I get a decent amount of sleep every night. And on days off, I make it a point to have a rest day— as much time in bed as I possibly can.”
Be who you are
“I don’t apologize anymore to friends for things I can’t do because I don’t have the energy. I got to a point where I know well enough that if I push myself to do things for other people, I’m gonna suffer the consequences. Also, I have to use the bathroom all the time because of issues related to my kidneys, so I just do it. I’ve become so comfortable that this is what it is with myself that I don’t feel I have to apologize for it.”
Help people understand
“When friends wonder why yesterday you were able to be active and today you can’t, explain that every day is really different. Say, ‘There are days when I’m great and I can do a million things and days where I have to take it easy more.’”
Adds Christele, “I also make it a point to tell friends that I don’t like conversations that revolve around my lupus. I want to be involved in other things that are going on other than my fatigue and joint pain.”
Give yourself some grace
“When flares happen or lack of energy happens, a lot of it we can’t control. You can be the best patient, you can take all the meds, but flares still happen from time to time. It’s no one’s fault really.”
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