A Miami native, Stephanie Aleite is a new mom who feels that her suffering from arthritis isn’t in vain. Instead, she shares her experience with others in hopes they will live a better life.
Stephanie was very surprised when she first heard she had juvenile arthritis as a young child. Until her late teens, she didn’t know she’d been diagnosed with JA at age 5, which started with a deformed finger on one hand and soon spread to her whole body.
She quickly started treatment that controlled her disease. “I was fortunate to respond so well to treatment that my disease went into remission for most of my teenage years. My parents thought my remission would last my whole life, so they had no reason to tell me about a disease they thought was part of my past.”
But Stephanie’s RA came roaring back with a vengeance at age 17. “My mom had to tell me, ‘Well, you had a little bit of arthritis when you were little.’ So I had grown up with the symptoms and pains of the disease, including several years of remission, yet never had a name for it.”
The Challenges of RA and Being a New Mom
Stephanie knows all too well that most people don’t realize how intense and complicated arthritis is. But she’s learned to accept their misperceptions. “It’s OK that they don’t fully understand. I don’t even understand it myself sometimes,” she admits. “The disease is so bad that it’s kind of unbelievable. The only way I can really describe something so complex is to explain that my immune system is attacking my body.”
A big obstacle Stephanie faces today is having trouble sleeping. “That’s the most basic kind of human need that RA gets in the middle of,” she says. “It’s hard to sleep when you can’t get comfortable because you’re in pain. Sometimes my back hurts so bad that I wish somebody would wring out my spine like a washcloth.” Stephanie says it’s hard to turn doorknobs and pick up a heavy pot of boiling water for pasta.
Her RA is especially tough around the holidays. “It’s stressful for anyone, even without arthritis. I love to cook, and usually people are pretty understanding that I’m not able to do everything or cook an entire feast for 20 people.”
Something harder for some to understand is that she can’t make it to all the holiday parties. A friend gave her sound advice to feel less overwhelmed: Just disappear quietly into another room when you need a short break. “You don’t have to be in it the whole time. I tried so hard to be all-in, all-perfect, all-visible. But it’s OK to show people your vulnerability. Take 15 minutes by yourself and relax a bit if you need to.”
Taking care of her son, Santiago, who just turned 1, can also be challenging. Carrying him, getting him into and out of his car seat or putting him into his stroller or a shopping cart can trigger pain. She tries to run errands on her husband’s day off so he can help.
No Longer on the Sidelines
Stephanie says having good communication with your health care team is vital. “I’m thankful to have an open, honest relationship with my doctor. Finding a doctor who views our relationship as a partnership has been pivotal. My experience has changed me from someone who sat on the sidelines in my fight against RA, to the girl in the ring, ready to kick RA in the teeth.”
Stephanie makes time to connect with others who also struggle with arthritis, including being a patient advocate and blogger. Before she became a mother, Stephanie led a local Live Yes! Connect Group, bringing together doctors and patients to talk about treatment goals and tools to bridge the gap between doctor visits.
Stephanie says all the Arthritis Foundation’s grassroots advocacy efforts comfort her. “The Arthritis Foundation is so committed to fighting for our rights in Washington and in states around the country. I don’t have time or don’t fully understand all the laws. Knowing they’ve got my back so I can spend time with my son is a big enough reason to donate.”
Though arthritis can be distracting, Stephanie finds plenty of other things to occupy her mind. Her interests include crocheting, gardening, writing and a big favorite: cooking. “Arthritis can prevent me from doing these things, but it’s not everything I think about or all my life revolves around.”
Stephanie shared these words of wisdom in one of her blogs: “Someone once told me that RA is like a friend who will be by your side for the rest of your life, and how I treat that friend determines how that friend treats me. So, I’ve learned I have to care for it, respect it and—occasionally—entertain it.”