November marks National Family Caregiver’s Month. This month’s theme is “Take Care to Give Care,” and it emphasizes the physical and emotional demands of caregiving. Caregiving can take a toll on a relationship, and it’s important for RA patients to understand their caregiver’s perspective, particularly when the patient and caregiver are married.
Stephanie Aleite and her husband Andres are a young couple who have been managing Stephanie’s RA together since they began dating in their late teens. We caught up with them to hear their thoughts on the complexities of being both patient and caregiver, husband and wife.
Stephanie and Andres, thank you for sharing your story with us. Could you share a bit about Stephanie’s diagnosis and how Andres was introduced to RA?
Stephanie: Thanks for giving us this opportunity to share our story. I am a strong believer in being open and want people to see the “real” side of RA. I have my own blog where I post regularly and am honored to share my story on the Vectra® DA blog.
I was diagnosed with RA at age 5. It went into remission in my teens. My doctor and parents thought I was cured. I was young enough that I didn’t even know my childhood pain was called RA. In my late teens when I began dating Andres, I began feeling pain but didn’t know what it was. Sometimes I walked with crutches or knee braces. Andres got involved right from the start. On one of our first dates, he took me to a beautiful park. I was in so much pain that I couldn’t walk down the stairs. He picked me up and carried me so that I could see the rest of the park.
Andres: Our RA journey unfolded together. I had never heard of RA, but when you care about someone, you want to know what’s going on. I encouraged her to ask her mom about her medical past and researched RA when we learned of her earlier diagnosis.
Stephanie: Having Andres there for me was a vital part of my journey. At first, I didn’t want to admit that I wasn’t fine. I didn’t speak up for myself to ask questions. He went with me to my appointments and said, “She’s not fine, she’s limping!” He asked questions about things he had read.
The first doctor that we saw wasn’t helping at all. Week after week, he kept telling me to come back, but he never ran any tests. He didn’t even do X-rays or MRI or ultrasound, let alone rheumatoid factor tests! It was crazy. After CRP and ANA blood tests, imaging tests are also immediately taken to view inflammation and/or permanent damage in the joints. He never prescribed medicine. Andres was the one who stood up for me to that doctor. He was the one who found my new doctor, who ended up helping me so much. Andres was a strong advocate.
Andres: Sometimes those around the patient can be more objective about what they see happening with the patient. I was able to tell the doctor what I noticed on a day-to-day basis. Stephanie went through some tough times. She was in a wheelchair for more than a year. I had to carry the weight for both of us, physically and emotionally. That meant cooking, cleaning, combing her hair and helping her get dressed.
Andres, it sounds like you were a huge support for Stephanie. We know that being a caregiver can be a tough job. What support did you have outside of the relationship, and how did you support each other as a couple?
Andres: Of course, as husband and wife, we supported each other. Outside of supporting each other, I was lucky to have my dad’s support. He worked in a pharmacy his entire life. He knew so much about medicine, insurance and the ins and outs of dealing with a chronic condition. He had so much love, so many good tips and even got us a wheelchair and a cane for Stephanie. I supported Stephanie, and my dad supported me.
This relationship can be complex because, in addition to being a patient-caregiver relationship, you also have a relationship as a couple. Stephanie, did you find ways to support Andres in what he was managing as a caregiver?
Stephanie: As a wife, of course, I wanted to support Andres. Over time, I learned how to do that as an RA patient. The biggest wake-up call for me was realizing that my choices affected him. I remember one day early in our marriage wanting to surprise Andres. I spent all day cleaning our home and making it sparkle. I thought he would be so grateful, so I pushed through the pain. When he got home, my joints were swollen. I was in so much pain, I could barely get off the couch. He got angry and told me it wasn’t fair that he had to see me in such pain because I wanted a clean house for him. That event opened my eyes to see that I was not the only one going through this. Even if I was okay with the results of my actions, I wasn’t the only one affected. Before, I had a mindset that RA wasn’t going to get in the way of my everyday life, no matter how painful. What I saw was that it was getting in the way of our life. It finally hit me that we were doing this together.
Andres: The truth is that it’s sometimes just as challenging for the caregiver as the patient. She wanted to live a normal life. She didn’t want anyone to think differently of her. I helped her see that asking for help isn’t defeat and that asking can aid you along the way.
Stephanie: It’s also important for the patient to understand that it’s okay for the caregiver to be angry with the RA and not to take it personally. The caregiver might need to scream or yell or vent. The patient might need to be the emotional support for the caregiver during those moments. Let them hate the RA but love you.
I also supported him by becoming more vocal. I learned from him how to advocate for me. At one point, I began to feel it was important for me to begin to go to the doctor on my own. I also took on the insurance calls. It took something off his plate. He’s confident because I do ask for help in the times that I’m tired or unable.
We discuss the results all of my rheumatoid arthritis tests and other lab tests for RA. After all these years, Andres continues to keep up on the latest news in RA. He’s always looking for new information. He was the one who found out about the Vectra test. He came with me to one of my doctor’s visits and noticed the brochure in the waiting room. He was quick to learn more and to ask about it.
Andres: The Vectra blood test score has been very helpful in guiding our discussions and shaping how we talk about what to do next for Stephanie.
Stephanie: When I first took the Vectra test, the score was higher than we expected. We waited, but my second score came back even higher. So we talked about how that knowledge impacted our treatment decision. When a treatment isn’t working, or when I am just not feeling right even on medication, we go back to Vectra. I’m so happy to report that from a high of 51, my score is now a 27.
Andres: Vectra validated what Stephanie was feeling and allowed us to measure progress. On a closing note, I’d like to add that straightforward communication is vital so that you can be there for each other. Also, knowledge is power. The more caregivers and patients understand RA, the better they are able to cope.
Stephanie: Our patient-caregiver relationship is complex because it is also a romantic relationship, but we are in it together. As with any relationship, it’s important to stay united!
For more information about National Family Caregiver’s Month and tips for caregivers, please visit this link: http://caregiveraction.org/national-family-caregivers-month.