7 Top Tips for Explaining Rheumatoid Arthritis to Friends and Family

From everydayhealth.com

When you live with a chronic illness such as rheumatoid arthritis, having friends and family members who don’t seem to understand your condition and how it affects you can be trying. But there are ways to tailor your message so your listeners will get a better sense of what you’re dealing with.

“It can feel frustrating when family and friends sometimes make assumptions, believe they understand fully, or fail to understand nuances. This usually leaves the patient in the position of needing to educate,” says Alicia Rozycki, PhD, a health psychologist who lives with RA herself in Colorado Springs, Colorado.

There are lots of simple strategies that can help you do just that, experts say. Here are seven approaches that can help you and your loved ones get on the same page about your RA.

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1. Keep It Simple

Take the person’s knowledge of health, generally, into consideration when explaining your situation. Unless you know the person you’re speaking to is familiar with medical jargon, look for simpler ways to say what RA is and how it affects you, recommends Dr. Rozycki.

For instance, instead of saying that your RA is a systemic autoimmune disease, you could say that your RA is a disease where your immune system attacks the joints throughout your entire body. If you’re talking about your symptoms, you can say something straightforward like, “My hands are swollen and I need to take a break”’ or “I need to stop and rest my feet for a bit,” Rozycki adds.

2. Use Analogies

“As a therapist working with patients with chronic diseases like RA, I have learned that the major challenge isn’t the disease itself, it’s managing other people’s expectations,” says Janee Young, a licensed marriage and family therapist and the clinical director of Wellness Detox of LA in Los Angeles. To help people better understand what you’re experiencing, analogies can help.

Explaining fatigue in RA can be difficult; it can be hard for the person to understand why you don’t have the capacity to do a certain activity or need certain accommodations. The deep fatigue that about 1 in 6 people with RA experience is very different from the kind of tiredness someone might feel after a stressful day or a night of poor sleep. Fatigue is also linked to increased disease activity.

Comparing your fatigue to something familiar that the person has been through — a virus like the flu, for instance — may help them understand the intensity of your symptoms. To convey what stiffness and soreness feels like, you might say that you woke up feeling the way someone does after overdoing it at the gym — or use a different analogy that feels true to your level of pain and stiffness.

3. Describe the Functional Effects of Your Symptoms

It may be hard to describe your level of pain to another person, but it is possible to say how your pain limits your function, Rozycki says. For example, “The joints in my fingers hurt so much I can’t open a jar or carry a bag in my hand.”

On the other hand, it’s not always necessary to share tons of details, especially with people you don’t know that well. “If it’s a situation where the RA patient is around people who do not know about the disease, they can just as easily say, ‘I can’t get this jar. Can you give it a try?’ without having to launch into an explanation of their private health information,” says Rozycki. In most cases, the person will be understanding and willing to help.

4. Ask for Specific Accommodations

Even with thoughtful explanations, it may still be hard for some people to grasp what life with RA is actually like. Rather than asking loved ones to understand your experience, which can feel abstract, try managing their expectations by asking them for specific behaviours, Young suggests.

In practice, that might mean telling them things like, “It makes things easier for me if plans are flexible,” or “I appreciate advance notice when planning events,” she recommends. Those are things most people will want to accommodate, even if they can’t fully understand why flexible plans or advance notice is so important for you.

5. Talk About the Difference Between Good and Bad Days

RA symptoms aren’t static. Rheumatoid arthritis flares, during which pain and swelling or functional limitations happen, have been shown to be linked with changes in sleep patterns, emotional distress, or changing or discontinuing a medication. If you’re able to be very active or do all of your typical activities when your RA is well-controlled, family members or friends may hold up these days as examples of what you’re able to accomplish — even though your capacity on bad days can be very different.

“It may be confusing to family and friends when they see you can tolerate 20-mile bike rides, but then at other times, during flares, struggle to walk from the driveway to the house,” Rozycki says.

This disconnect can be frustrating for everyone, so it’s worth addressing with loved ones. “I tell my clients to explain that a good day does not mean that RA has left them forever; rather it is just another data point in an ever-changing continuum,” Young says.

6. Let Them Know How They Can Help

Help can come in many forms. It could be taking on certain household chores, making the effort to learn more about RA, or accompanying you to a healthcare appointment, for instance. That said, your loved ones can’t read your mind — so you’ll have to ask for what you need.

Asking for help isn’t always easy, but it really is one of the best ways to give your loved one a sense of how RA impacts you. “In my experience, the best conversations with loved ones aren't necessarily about educating them about how hard RA is to live with. Rather they're about showing them ways in which they can function well as part of a team that supports someone whose condition changes each day,” Young says.

7. Give Them Updates When Things Change

While treatment can lead to remission for some people, in others, RA can worsen over time. Adapting to new limitations can be a learning curve for you, and it can take even longer for family and friends to catch up. In the meantime, they may still relate to the person you were when your symptoms were milder, Young says.

“That means that you may need to point out when someone’s expectations aren’t matching up with your current abilities. I frequently remind my clients to tell them, ‘The way you were supporting me two years ago may not be the same kind of support I need today,’” says Young.

The Takeaway

• Communicating openly and using relatable examples can help friends and family better understand how your RA affects your daily life and how they can support you.
• Explaining the practical impact of your symptoms may be more meaningful than trying to describe pain or fatigue alone.
• Because RA symptoms and support needs can change over time, keeping loved ones updated and asking for specific forms of help can make navigating the condition easier for everyone.

https://www.everydayhealth.com/rheumatoid-arthritis/tips-explaining-rheumatoid-arthritis-to-loved-ones/

How Rheumatoid Arthritis Can Affect Your Marriage — and What You Can Do About It

From everydayhealth.com

Rheumatoid arthritis (RA) affects more than your joints and mobility. The impact of the chronic autoimmune disorder can be profound, reshaping daily routines and the emotional rhythm of marriages and long-term relationships.

When one partner develops RA, couples must adjust to chronic pain, fatigue, stiffness, and unpredictability. A small study involving 17 couples living with chronic illness found that partnership “disappears” behind the disease, caregivers mourn the loss of intimacy, and couples struggle with changing roles and rebalancing their relationship. Over time, both the person with RA and the spouse can encounter feelings of loss, frustration, guilt, and resentment.

But experts say those reactions are normal — and that couples can find ways to adapt together in the face of an RA diagnosis.

“When one partner develops a chronic illness — particularly a condition like rheumatoid arthritis — the dynamic within the relationship often changes. Partners who once saw themselves as equal may suddenly find themselves shifting into a patient-caregiver dynamic,” says Anthony Chambers, PhD, the chief academic officer of the Family Institute at Northwestern University and a clinical psychologist focused on treating couples across the lifespan on a range of issues, including chronic illness. 

That shift can be difficult, but it does not have to define the relationship.

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Psychological Effects on the Partner With RA

RA can take an emotional toll on the person living with it, especially when symptoms begin to interfere with independence and identity — impacting marriage as they once knew it.

People with RA may experience:

• Anxiety, depression, and a reduced quality of life: Research suggests people with rheumatic diseases face higher rates of anxiety and depression, which can affect daily functioning, relationships, and social life. Some people report feeling isolated or left behind by friendships formed before their diagnosis.
• Grief for the life they once imagined: Some people mourn their pre-disease life and experience a deep sense of loss of their old identity, as well as the future they once pictured for themselves. Old hobbies like hiking or playing sports may not look the same anymore, Chambers says. “There’s this loss of your autonomy. This idea that you can come and go and do what you would like to do, all of a sudden is taken away.”
• Anger, frustration, and feeling misunderstood: Many people with RA struggle with the loss of abilities they once took for granted. “What used to be simple, something we would take for granted, now is a challenge to do,” says Christine Crawford, MD, MPH, an adult and child psychiatrist and an associate medical director at the National Alliance on Mental Illness (NAMI). She notes that this frustration can lead to irritability or withdrawal. Because RA is an invisible illness, others may minimize the pain if someone “looks okay,” which can leave people feeling misunderstood and reluctant to share their struggles for fear of being judged or having their experience invalidated, Dr. Crawford says.
• Guilt and feeling like a burden: People with RA often worry about being a burden to their caregivers and may even struggle with self-blame. Chambers says many people feel guilt over needing help, not only in relation to their spouse but to their children. 
• Stress about money and contributing to the household: RA can bring worries about medical expenses, professional life, parenting — and whether you’re able to “pull your weight” across different roles and responsibilities.
• Changes in self-image: Because of swelling, changes in the shape of hands and feet, or weight gain and weight loss, people with RA report lower levels of self-esteem and positive body image. This can seep into your sex life and intimacy with your partner.

Psychological Effects on the Partner Without RA

Partners of people with RA may also experience a range of emotional responses.

Common feelings include:

• Sadness, anger, and helplessness: Research on relatives of people with inflammatory arthritis (including RA) shows that partners feel a wide range of emotions, including anger, frustration, feelings of loss, worry, and fear of the future.
• Stress about caregiving responsibilities: People feel the time crunch in their daily schedules, and may lack support from their families. This is exacerbated if the caregiver has health issues of their own.
• Resentment — followed by guilt: Feeling overwhelmed by added responsibilities and a loss of independence as caregiver demands take priority can lead to resentment.
• Caregiver burnout. Juggling caregiving responsibilities on top of managing the household and working on your career may lead to caregiver burnout, Chambers warns. One study found that over half of caregivers to those with RA provided more than seven hours of support per week, and some had to take leave from work or reduce working hours to provide care.

Chambers says caregivers should understand these feelings are common — and human.

“You may, at times, have feelings of anger and frustration about always being in this role of caregiver. And then you struggle with the guilt that comes with that thinking, ‘I shouldn’t feel this way,’” he says.

Partners are often processing these feelings while providing emotional support, empathy, and patience to their spouse, Crawford says. People living with chronic conditions can experience frustration, anger, or sadness as they grapple with the loss of abilities they once took for granted. Those emotions may spill over into the relationship, she says.

“The person experiencing the condition can project a lot onto their partner — the anger that they have inside, the sadness, the frustration,” Crawford says.

That can make the experience particularly complex for caregivers. They may be worried about their partner’s health while also adjusting to how the disease affects their own lives — from changes in routines and responsibilities to sacrifices in social activities, travel plans, or career decisions, Chambers says.

Practical Changes in the Household

When one partner develops RA, everyday responsibilities at home often need to shift. Tasks that once felt routine — like cleaning, cooking, running errands, or lifting children — can become more difficult when joint pain, stiffness, and fatigue are involved.

“Couples are oftentimes having to renegotiate their relationship in order to be able to manage the illness that they’re struggling with,” Chambers says, noting this extends across physically demanding chores, looking after the kids, and running the household.

These changes can take time to figure out, but experts say a few strategies can help couples adapt more smoothly.

• Revisit the division of labour. Talk openly about which tasks are realistic for each partner and adjust responsibilities as symptoms change. The partner without RA may decide to take on more physically demanding chores, while the partner with RA may handle tasks that are easier to manage on days when symptoms are flaring. Depending on their symptom severity, they may even want to take ownership of tasks like paying bills or ordering groceries online, Chambers says.
• Break large tasks into smaller ones. Chambers notes that tackling chores in shorter bursts, such as cleaning one room at a time, can make them more manageable on difficult days. 
• Decide on parenting duties. Chambers says that some couples may need to rethink what activities they can comfortably do with their children, especially during periods of fatigue or increased pain. While the parent with RA may not be able to play soccer in the backyard, they can still maintain a bedtime story routine.
• Consider outsourcing when possible. Grocery delivery, yard work, or childcare can relieve pressure on both partners and free up energy for more meaningful time together, Crawford says. Do not feel like you as a couple must take care of everything alone. “Community becomes a really important piece … when you have the community of a support system, it makes it much easier to be able to navigate things,” she says.

Crawford says that these adjustments often happen gradually as the disease progresses, with couples slowly adapting their routines over time. Instead of expecting life to continue exactly as before, she says it’s important to recognize that some changes are simply part of living with a chronic illness. 

“Life looks different now. And when life looks different at a certain point in time, you’ve got to adapt,” Crawford says.

Learning to Reconnect and Bridge the Gap

RA can complicate everyday life for couples, but there are ways partners can stay connected and support each other.

Communicate openly and check in regularly. Both partners need space to talk honestly about how they’re feeling — physically and emotionally. Chambers suggests setting aside time for weekly check-ins so concerns don’t quietly build up. One simple approach is to ask each other, “On a scale of 1 to 10, how are you feeling and how are you feeling about how we’re doing?” That kind of open-ended question can help get the conversation started and address potential issues early.

Listen to and validate each other’s feelings. Build a supportive environment where each partner feels heard and safe enough to be vulnerable, Chambers says. “You need to feel like teammates working against this external thing.” A study of 163 couples living with rheumatoid arthritis found that the way they coped together affected their psychological well-being and relationship quality. It was couples who practiced “dyadic coping” — or sharing stresses, problem-solving together, and supporting each other emotionally — that reported lower levels of psychological distress and better relationship quality.

Cocreate a new shared vision. Chambers says coming to terms with RA can involve a grieving and acceptance process as couples adjust to a new stage of life together. When they’re ready to, partners can begin “cocreating their new shared vision” — a new life they’re excited about from how they define success in daily life to what shared activities will look like. Make sure you incorporate some flexibility in planning, recognizing that symptoms and energy levels can change from day to day, he says.

Redefine what intimacy and connection look like. Fatigue and joint pain can sometimes make physical intimacy difficult, but that doesn’t mean couples have to lose closeness. “Intimacy doesn’t have to look a certain way. People forget small moments like holding your partner’s hand or putting your head on your partner’s shoulder … all of those are very intimate moments that still foster connection,” Crawford says. If you’re not in the mood because of symptoms, it’s okay to let your partner know, too, Crawford says. At times, they may feel like they’re unattractive when their partner may be going through a flare.

Practice compassion. When tension arises, Crawford says it can help to remember what may be driving those emotional reactions. “If a partner becomes irritable, withdrawn, or unusually quiet, it may be the stress or pain they’re going through rather than a deeper problem in the relationship,” Crawford says. Understanding that context can make it easier to respond with empathy, even when the situation feels difficult.

Learn about the disease together. Understanding RA can help couples develop more realistic expectations about what daily life might look like. Chambers says that educating yourselves about the illness by attending doctor appointments together can help align expectations with reality and reduce frustration. It also provides partners with an up-close understanding of their spouse’s disease.

Lean into a wider support circle. Connecting with others who understand the experience of chronic illness can help couples feel less alone. This might include patient support groups, caregiver networks, or trusted friends and family members, Crawford says.

The Takeaway

• Rheumatoid arthritis can shift a relationship into a patient-caregiver dynamic, leading to feelings of grief, guilt, or resentment for both partners.
• To adapt, couples should communicate openly through regular check-ins and practice solving problems and managing stress as a team.
• Adjusting daily life may involve renegotiating household chores, outsourcing tasks, and finding new ways to maintain physical and emotional intimacy.
• Educating yourselves about the disease together and leaning on a wider network of friends or support groups can help align expectations and reduce isolation.

https://www.everydayhealth.com/rheumatic-conditions/how-rheumatoid-arthritis-can-affect-your-marriage/

PODCAST: Two Moms on Starting a Family With Arthritis

From arthritis.org

Having a family is a wonderful gift. But starting a family with arthritis is not without its risks. One of the keys to making it a safe and joyful experience is proper planning. The truth is an unplanned pregnancy with a rheumatic disease can pose a threat to the health of both mom and baby. Ideally, getting your arthritis under control is step number one. In this episode, two moms with arthritis discuss their prepartum, pregnancy, childbirth, postpartum experiences and more. 

Show Notes

Having a family is a wonderful gift. But starting a family with arthritis is not without its risks. One of the keys to making it a safe and joyful experience is proper planning. The truth is an unplanned pregnancy with a rheumatic disease can pose a threat to the health of both mom and baby. More than 50% of women with a rheumatic disease don’t get medical advice before pregnancy. Ideally, getting your arthritis under control is step number one. Just three to six months of well-managed arthritis improves the chances for a healthy pregnancy. Getting pregnant, staying pregnant and delivering a healthy baby with arthritis can be challenging. 

In this episode of the Live Yes! With Arthritis podcast, two moms with arthritis explore these issues and more when it comes to starting a family with arthritis.

Cristina Schaefer: Hi, I'm Cristina Schaefer, your host for this episode. I was diagnosed with rheumatoid arthritis about 20 years ago and have been living through the ups and downs in different stages of my life ever since. I'm a long-time volunteer with the Arthritis Foundation, serving in roles at the national level and at the local level here in Houston, Texas. I'm also a mom to an almost 9-year-old daughter and a 6-month-old baby boy, which brings us to this episode's topic. 

Having a family is a wonderful gift, but starting a family with arthritis is not without its risks. One of the keys to making it a safe and enjoyable experience is proper planning. The truth is: An unplanned pregnancy with rheumatic disease can pose a threat to the health of both mom and baby. More than 50% of women with rheumatic disease don't get medical advice before pregnancy. Ideally, getting your arthritis under control is step number one. Just three to six months of well-managed arthritis improves the chances for a healthy pregnancy. Getting pregnant, staying pregnant and delivering a healthy baby with arthritis can be challenging. 

So, in this episode of the Live Yes! With Arthritis podcast, we'll explore these issues and more when it comes to family planning and pregnancy with arthritis. Today I'm joined by Natalie Decker Lemke. Natalie is a professional race car driver, one of the top young drivers in the NASCAR scene who started racing go-karts at age 9. She was born with juvenile arthritis and was officially diagnosed with JA at age 2. All that, and she's also a new mom. Natalie, welcome to the podcast. 

Natalie Decker Lemke: Thank you so much for having me. I'm so excited to chat with you today. 

Cristina Schaefer: Tell us a little bit about yourself and your experience with arthritis.

 Natalie Decker Lemke: Well, like you said, I was diagnosed at age 2. And I don't remember very much of my childhood with the beginnings of it. But as I got older, I started noticing, like, OK, my parents are giving me medicine once a week, like injections. I was taking methotrexate, and the only thing that really got to me was the medicine, because I didn't understand why I had to take it, because I felt great. And then when I would take the medicine, I would feel so sick for, like, three days. And so, I never understood it. And I was always going to the doctor’s every three weeks to get bloodwork done. And it honestly just felt normal. I didn't know any different. And eventually, around age 12, I went into remission, and it was amazing. I could stop that medication. I felt so good.

And a few years later, I was about 16, 17 years old, and all the symptoms started coming back. And then I was like, this is painful. Because I lived a couple of years with no pain. I was pain-free and no symptoms. And then it all came crashing down, and I had no idea truly how painful it was because I was born with it. I didn't know any different when it came to the swelling joints and all the stuff, the stiffness. I couldn't straighten my arms all the way; they were locked for years. I think I was about 9 or 10 years old when I was finally able to fully straighten my arm, both arms. I was just so used to the pain. So, when I had those few years of no pain, I was like, wow, this is truly amazing. Now I get it. (laughs) 

Cristina Schaefer: Yeah, pain is probably one of the most difficult things to describe. Or when they ask you the pain level 1 to 10, when you live with chronic pain, it's like, oh, I'm at a 3. But most people, that'd probably be more like a 9. 

Natalie Decker Lemke: I love seeing videos, like on TikTok or something, of other women talking about their pain levels, because it does blow my mind. I tell my husband every day, "If you woke up with the pain I had today, you would be staying in bed." And I'm up changing the diaper and feeding our baby. (laughter) 

Cristina Schaefer: Exactly. So, before we dive into pregnancy, birth and all things postpartum, let's talk about family planning. How were things prepartum for you with your arthritis and just everything, physically, emotionally, mentally? 

Natalie Decker Lemke: I always knew I wanted to have a family and become a mom, and as I was starting to really get control of my autoimmune disease, I then got diagnosed with psoriatic arthritis, psoriasis, Hashimoto, the thyroid-like hormonal stuff. So, I was just like all over the place, really struggling. All my hormones were way out of whack. And this was… We were already engaged, and I was like, "I will call off this wedding or move it to a different date," because I was like, "We're going to start trying for children now. I'm not waiting. I'm scared." 

I was terrified because of all these doctors telling me, "It's going to be so difficult. We don't like what your bloodwork says." So, I told my parents, I told Derek, "We're going to start trying for a baby now." And this was right after we got engaged. So, over a year before our wedding. I was like, either I'll be a pregnant bride or we're moving the date of our wedding. I didn't care. I did not get pregnant until well after our wedding. It was probably a full year of trying to conceive until we were successful with our little son, Levi. 

Cristina Schaefer: Yeah, it took us almost a full year to conceive as well. There was so much planning that went into it. I was in a controlled state with my rheumatoid, and I talked to my rheumatologist about my plans to conceive. And against his advice, I decided to go the “no medication” route. I had felt good for a couple years, so I think it kind of tricked me into thinking I could do no meds. And so, I went a full year trying to conceive. It wasn't happening. My symptoms were coming back, and I ended up having to do a few rounds of self-injectables, and then I magically conceived. 

Of course, after the fact, my rheumatologist was like, "Yes, your body was under stress, so you couldn't conceive." And I was like, "Well, I guess that makes sense." I don't think people realize that sometimes it takes a while to get pregnant when you're living with a disease. In hindsight, Natalie, with the planning and everything you did, is there anything you would've done differently or something you wish you would've known? 

Natalie Decker Lemke: I wish I wouldn't have been so stressed about it, because I do think that had a big play in it as well. But overall, the one thing I wish I would've known was that certain medications that I was still able to take through the pregnancy, what effects that would have on Levi once he was born. I didn't do my research, and I was on that medication since 2019. So, for a long time before we started trying to have a child. But I was on a beta blocker. 

I'm on it pretty much now for life with my high blood pressure, so I had to stay on it through pregnancy, and it's very safe. But I guess it makes it difficult for babies to regulate their blood sugar once they're here. So, that was part of the reason on why our baby was in the NICU for so long: He had to be on an IV of sugar water. And I wish I would've known that. I feel like I could have been a little bit more mentally prepared for that. 

Cristina Schaefer: Yeah, definitely. Just having a good understanding of how what you're taking can affect the baby, which is the biggest regret I have and one thing I did very differently the second time around: I actually listened to my doctor's suggestions. That first time around, I just wanted to feel I was having a normal pregnancy. But the truth is: No pregnancy is normal; everyone has different experiences and goes through different things. Let's talk about pregnancy. I know for me, the first was very different from the second. For me, the first was easy-breezy. The second pregnancy was a struggle almost every single day. How did you feel throughout your pregnancy? 

Natalie Decker Lemke: I love to hear that you had a good one, because I did not experience a fun pregnancy. I would tell my friends all the time, “I’m so excited. Like, it’s going to be so magical, it’s going to feel so amazing.” I just thought it would be like this amazing, magical thing, and it was the most miserable thing I've ever done for nine months. I was in so much pain every single day. 

Everything was perfect bloodwork-wise. I was so swollen; I was just so ill. Like every day, I just didn't feel myself. And it felt so similar to a flare-up, like, fatigue that, no matter what you do, it just didn't go away. And being nauseous, and my body just aching and hurting so bad. I was like, eventually this will have to get better as the pregnancy goes on, and it just never did. So, it was very scary for me, mentally I just wasn't doing well. But instantly, within 12 hours, maybe sooner than that after giving birth, I was completely myself again. I felt like myself instantly. 

Cristina Schaefer: A lot of women experience remission with their arthritis during pregnancy. I was lucky to experience that both times. But the second pregnancy, I was just wiped out every day. I just felt miserable every single day. And once he was born, like you, I felt a lot better. 

Natalie Decker Lemke: Yeah, and how can you hate being pregnant? Like, that's so magical. OK, now I get it. I hated it. I would rather give birth every single day than experience what I felt those nine months. (laughs) 

Cristina Schaefer: Absolutely. Let's talk about actual childbirth, because I feel very lucky that rheumatoid arthritis didn't actually affect the labour and delivery process for me either time. Tell us about your birth. How was it with your arthritis? And how was it going with a newborn? 

Natalie Decker Lemke: Well, that's amazing that it didn't feel like it affected you during the birth. I took all the medications and threw them out the window as soon as I found out I was pregnant, except for the beta blocker; that was the only thing I stayed on. And I was a little nervous. My rheumatologist supported me fully in that. She was like, "You can stay on your medicine until the third trimester if you want to, or you don't have to. It's up to you." I said, "I don't want to have to worry about it." So, I went off of that medication, and I was a little nervous that I was going to feel weak after nine months. But the whole birth and the whole time I was at the hospital was amazing. The team that I had around me made it feel so magical and so great. 

Cristina Schaefer: I almost feel like RA helped me with the labour and delivery process, because there were points where I was having apparently really major contractions. And I was fine, I felt OK. 

Natalie Decker Lemke: When I went into my 37-week appointment, I was not feeling good that day. I just had a feeling like I was going to be going to labour and delivery. And I told my husband, "Pack your cell phone charger." So, I knew it, I totally knew it. And I got to labour and delivery and yeah, he was a little bit in distress, and I was having contractions, like, every minute. And I had no idea. They're like, "You don't feel those?" I'm like, "No." (laughter) "And you guys told me I would know." They're like, "Well technically, you're in labour right now." 

Cristina Schaefer: (laughs) Yeah. 

Cristina Schaefer: Before we get into some postpartum experiences, let's talk about breastfeeding for a minute, because I know it's a hot button subject for a lot of people. I put so much pressure on myself to breastfeed, and I actually attribute that stress to being the trigger of what ended up being the worst flare of my entire life when my daughter was only 10 days old. She was crying. I got out of bed to feed her, and the second my foot touched the ground, I just felt pain from literally my entire body, from my toes all the way up my body. And it lasted a very long time. 

This time around, I wanted to breastfeed again, but as soon as I started feeling the symptoms come back, I got on meds that were safe to breastfeed with and ended up stopping when my son was about 4 months old. Just having to go back to work, I couldn't keep up anymore. Breastfeeding is hard, and it's so much work, and I feel like people don't talk about it. Did you decide to breastfeed or not? 

Natalie Decker Lemke: Well, even before I knew I was pregnant, I told myself, "I'm not going to breastfeed." I knew that if I was going to experience a flare-up and needing to rest or go get my infusion and be sleepy all day, I didn't want to feel guilty of being away from Levi for so long. And then the other thing is the medication that I do so well on is not friendly with breastfeeding. I would not be able to take it and breastfeed him. And I knew that I wanted to stick with that certain medication because it does so well for me. 

Then he ended up being in the NICU, and he had a feeding tube for the first 24 hours. So, then I remember looking at my husband and saying, "I am so glad that I already decided not to breastfeed," because if I came into the NICU excited to breastfeed and have that be my journey, I think that that would've been my last straw. That would've destroyed me, seeing him with a feeding tube. I don't know what I would've done. But knowing mentally already that I wasn't going to breastfeed, period, the feeding tube didn't bother me whatsoever. The only thing that bothered me was I wasn't able to feed him his first meal. But he won't remember that. 

Cristina Schaefer: I think that was so smart of you to go that route. Women, we just put more pressure on ourselves, period. Whether you're living with a rheumatic disease or not, we just put pressure on ourselves. We want to do things the right way. And breastfeeding, if it's causing stress, if it's causing lack of sleep, physical and mental fatigue, all of that can lead to flares. My daughter, we ended up having to give her formula anyway. She got a little bit of both, and then I had to be on medication that was no longer safe for her to be breastfed anymore. 

Natalie Decker Lemke: There's some moms that shame moms for not breastfeeding. Or they're like, "You're giving your child poison." There's so many children that were bottle-fed with formula that are 35 years old right now, and so healthy and thriving. It didn't ruin them. (laughs) They’re doing great. 

Cristina Schaefer: My daughter is one of the smartest kids in her class, so I'm pretty sure she's doing fine. 

Natalie Decker Lemke: It was the formula. (laughs) 

Cristina Schaefer: I think it was the formula, exactly. (laughs) So your son is almost 5 months old, correct? 

Natalie Decker Lemke: Yes. The time flies so fast. 

Cristina Schaefer: It flies by. Mine is 6-and-a-half. I think we're just exactly one month older than you. How has it been? How are you doing? And how are you feeling today? 

Natalie Decker Lemke: I feel incredible. I have been loving the postpartum journey so much, and I know that's not the case for a lot of moms. And instantly, as soon as I came home, no pain whatsoever anywhere in my body. And then about three, four weeks go by and it just, like, went so downhill so fast. And I, still to this day — waking up in the morning is probably where my pain is the highest. I'll walk funny with a limp or really stiff-looking for about two to three hours in the morning until my body fully gets woken up, and the pain then goes down a lot throughout the day. I don't think it's going to be forever. 

My rheumatologist did tell me that, you know, a few months after you give birth and all the hormones leave your body eventually, and you'll have a flare-up, and a lot of women experience their worst flare-up ever after giving birth. I'm getting through it. But having my son, I feel like maybe he just gives me a little bit more motivation and energy and happiness. Doing this has just been a dream come true. 

Cristina Schaefer: I think one blessing of having a rheumatic disease like this is that you are trained to pay attention to everything that's going on with your body. You're trained to just say like, "Oh, I'm feeling down today. I need to do something about this," right? Because we know all of that can trigger flares. And so, we have to be so conscientious about what we're doing and how we're managing our time and our efforts and if we're resting enough. But when you're taking care of a baby, sometimes that goes out the window, and we, as moms, just focus on taking care of the baby. You still have to take care of yourself, or you won't be able to take care of that baby. 

Natalie Decker Lemke: Exactly. And that's something that I've learned from having arthritis. And you know, resting is good. You're not lazy if you need a day to rest. And some people feel so guilty about resting, especially moms. If you need a day to rest, that's healing, and that's what you need, and that's good for you. Resting is not lazy. And if your body needs it, that's what you should be doing that day. 

Cristina Schaefer: Absolutely. What has been the hardest thing for you? 

Natalie Decker Lemke: The pregnancy was the hardest. 

Cristina Schaefer: I think the hardest thing for me this time has just been knowing that sometimes I have to let go. I cannot control everything, no matter how much I try. You know, I can't control a flare just as much as I can't control my baby's sleep schedule. (laughter) I've had to learn to just let go in a lot of ways and stop thinking of letting go as failure, but as a shift of focus to things that I can control. And I know you, as a professional race car driver, you understand the want to always win. 

Natalie Decker Lemke: Yeah. (laughs) 

Cristina Schaefer: Letting go doesn't mean you're losing. It just means that you're shifting your focus, and I really had to teach myself that. 

Natalie Decker Lemke: A couple years ago I learned this equation: It's A plus B equals R. And A stands for everything you can control in your life, B stands for everything you can't control, and then R is the result. So, if you always just focus on everything you can control, you're always going to have your best result, because you can't control B, and it's going to be what it's going to be. Just focus on what I can control, especially when it comes to my health and how I feel for when I can be there for my son. 

Cristina Schaefer: I love that. I'm going to remember that equation. 

Natalie Decker Lemke: Write it down. (laughs) 

Cristina Schaefer: What has been the most rewarding thing? 

Natalie Decker Lemke: I was so nervous, because I wasn't breastfeeding, that he wasn't going to have that really strong connection with me. But as he's gotten a little bit older, I see it and it’s there and it did not change anything about that. 

Cristina Schaefer: Experiencing that worst flare-up of my life when my daughter was 10 days old, that really brought me down mentally. And you were saying that your son kind of brightens you up and pulls you out of it. I felt the exact same way. In fact, I started referring to her as my little ray of light because there's this darkness that I feel. But looking down on her, I would just think to myself, "You are so worth it." And then now seeing my daughter holding my son and playing with him, and she's just obsessed with him, and seeing the two of them together and seeing our family now complete as we wanted, I mean, there's no better feeling in the world. 

Natalie Decker Lemke: That's so sweet. 

Cristina Schaefer: Before each episode, we post a question on social media. For this episode, we asked: "How did arthritis impact your journey to becoming a parent?" We received so many wonderful, moving comments. So, here are just a few we can briefly discuss. The first one was from Linneia Marie. They said, "My first was a surprise. I stopped some of my meds cold turkey in fear. Only one med really needed to be stopped, but that caused a lot of pain throughout pregnancy. Prednisone helped a little, but it was rough. My second one was planned. I weaned off meds I needed, and while weaning, I was put on prednisone. That pregnancy was much better." I feel like I had the opposite story that she did. We were so planned, the first and not the second, but any thoughts there? 

Natalie Decker Lemke: All pregnancies are different, no matter what. And everyone keeps reminding me of that. I’m going to just go off of the hope that my second pregnancy could look so much different than my first. 

Cristina Schaefer: Samantha O'Neil said, "Diagnosed at 8, trying to start a family now, and it has been a very difficult journey. I wish they told me as a teen/young adult that I might have issues conceiving due to my RA." 

Natalie Decker Lemke: I wish I would've known, too, when I was younger. And that's just something that I feel like maybe not a lot of rheumatologists talk about. Especially when you're diagnosed at such a young age. When you're 8, you're not thinking about family planning, so it just never ever gets brought up. And then by the time you are wanting to start a family, it's, like, almost too late because it's like you never had that conversation. And now you're trying to catch up. And that's how I felt, too. 

So, I think that it's just, like, scary in general. And finding the right doctor… I always tell everyone: doctor shop. Shop around, because once you find the right doctor, they're going to, like, really want to support you in all the decisions you make: family, career, everything. And they're going to really try to focus on what medication's best for you and what you're trying to do with your life. It took me since I was 18 until I was 21, 22; that's how long I doctor-shopped around. (laughter) 

Cristina Schaefer: And I think this is a hard conversation. They were saying as a teen/young adult, you know, a lot of people, if they've grown up with juvenile arthritis, they might still be with their juvenile rheumatologist at that age. Maybe they haven't transitioned to an adult rheumatologist yet. You might be moving from one doctor to another. You might be going to college or experiencing different things and kind of put in different transitional periods. But that's really the time that that conversation needs to be had. Had I known, we would've started trying earlier in our marriage. We waited three years and then a whole another year of trying to conceive. It's definitely a conversation that I think needs to be had more. 

Anu Nigam said, "I was diagnosed a couple of years before I had my child. I'd been on the anti-TNF and methotrexate, which had to be stopped, of course. I was put on a high dose of steroids and asked to take nothing more than Tylenol. Pregnancy was not a pain-free journey for me as a consequence. After my child was born, I continued to battle with the pain for three months, after which I spoke to the paediatrician and told him I couldn't deal with the pain and the stresses of being a first-time mom of a premature child with gastric reflux. He understood. My child went on formula, and I returned to normal RA meds and was much happier for it. It enabled me to do more for my child. When the anti-TNF I was on stopped working for me, I was put on a biologic that altered my life significantly. Not only could I walk up and down the stairs pain-free, but I could also carry my baby as well. A first, a win. I am still on it and grateful. My baby starts high school in the fall." 

Natalie Decker Lemke: Wow. That's a beautiful story. I am on Simponi. I used to go in every eight weeks for an infusion, and now I do the at-home injectable, which… That's a biologic, and it changed my life as well. So, I love hearing that. 

Cristina Schaefer: Yeah. The medication that I was on for years: I would get Remicade treatments for years prior to my daughter being born. It didn't work for me after she was born. So, we went through years of trying different medications. Literally, it took five years before I found an oral daily medication that I started taking, and that changed my life and made me feel so good until I got pregnant with my baby boy. And now I'm actually on self-injectables. And they're working for me. 

Natalie Decker Lemke: It all changes. 

Cristina Schaefer: Yeah, just see what works when it works, I guess. Jordan Dry said, "Diagnosed when I was 9 years old. I had so much time living with it before having kids. However, growing into adulthood with RA brought new challenges, as if I was diagnosed all over again. There were challenges during both of my pregnancies, with each of my boys being born prematurely. My medical team attributed their births to the possibility that my body was fighting with each pregnancy. However, having RA has helped me understand somewhat of what my youngest experiences with his cerebral palsy. Even through the pain, fatigue and more, blessings continue to outweigh the RA." 

Natalie Decker Lemke: Wow. Yeah, you know, I just think that it's so incredible to hear all these stories of so many women experiencing all of this pain. When it's a 10, like, we're not joking, it's a 10, and we live with that. And to hear stories like that, it's just so incredible. Moms are really strong. 

Cristina Schaefer: We certainly are. This is a topic we have not touched on. Deepka Venkat said, "I worry that my children may have inherited my RA genes." Natalie, I'm sure I worry about that every single day. Is that something you're worried about as well? 

Natalie Decker Lemke: That's something that I was worried about well before even meeting my husband, and I would talk about it a lot with my family, and it scares me. But at the same time, my mom would remind me, "Look, you know what it's like to live with it, so you'll be the best caretaker and help and give the best advice, and you're not going to be scared to advocate for your child in the doctor's office, because you've been doing that for yourself your whole life." So, then I got over that fear really fast, and that is not bothering me whatsoever. 

The one fear I had was then, before having my son, which now it's not a fear anymore because I'm living it and feel like I'm thriving, was not being able to take care of my child the way I wanted to because of my arthritis and the pain. There's been a lot of parents at a lot of different Arthritis Foundation events that have talked to me, and they were like, "Are you upset that you have arthritis? Like, do you feel like it's ruining your life?" And I was like, "No." And they're like, "Your child will feel the same way." 

Cristina Schaefer: Yeah. That's such a good point. As patients, we've been kind of forced to always pay attention to our bodies. You know, kids experience legitimate growing pains. And when I was a child, my doctor believes that I had rheumatoid arthritis, but it was undiagnosed, or juvenile arthritis, but it was undiagnosed. My mom kept taking me to doctors, and they kept saying it was growing pains. But my daughter, there's sometimes that she is in pain, and she'll be crying and, you know, we'll need to put something on, a cream on her, to help with the pain and things like that. 

And I was sharing this with a paediatric rheumatologist that I know that is also involved with the Arthritis Foundation. He said, "Cristina, you'd be the perfect mom for a child with JA because you're watching everything. You're paying attention to everything. You know what to watch for, you know to look for hotspots and nodules, and you know all of these things. So, if that ends up being something you have to deal with, she's got the perfect mom for it." 

Natalie Decker Lemke: Exactly. 

Cristina Schaefer: Another comment we have here from Cristina Saunders said, “I was diagnosed with arthritis at 14, so it has been a part of my life as long as I can remember. When I started trying to have children, I went through many, many miscarriages, which was incredibly difficult, not just on me but also my husband. During my one successful pregnancy, I had to give myself daily heparin injections. My son is now 20, and I’m so thankful for him. Heparin did not work for a subsequent pregnancy, so it’s difficult to know if that’s what helped. 

“Something I didn’t expect was that my arthritis went into remission around 20 weeks into the pregnancy and stayed quiet until he was about a year old. That time gave me the relief and helped me focus on being a mom. I loved being pregnant. Living with arthritis while raising a child has had its challenges, but it’s also brought a lot of strength I didn’t know I had. You are not alone.” I did get to experience remission. Did you experience that as well, Natalie? 

Natalie Decker Lemke: I was technically in remission when my rheumatologist would do my bloodwork because I was always nervous that I was having a flare-up, because all my symptoms I was feeling during pregnancy felt like a major flare-up. But it was not anything to do with my rheumatoid arthritis or my psoriatic arthritis. Everything was all in check and really good. So technically, yes. And she told me, "Once you get pregnant, you're probably going to experience remission. Most women do." So, I was so excited. I'm like, I'm going to feel so good while I'm pregnant. But that wasn't the case. 

I feel like I hear so many women talk about going into remission and how good they feel. That's so incredible. That just shows, like, how incredible our bodies are while we're growing a baby and how strong we are, and how magical it is… a disease that doesn't have a cure, and you get pregnant and you most likely will go into remission, it's mind-blowing. 

Cristina Schaefer: To close each episode, we typically share our top three takeaways from the episode. So, Natalie, what are your top three takeaways from today? 

Natalie Decker Lemke: My top three takeaways would have to be: Going into remission while you're pregnant is incredible, that that is even a possibility. Medications that you're able to be on while pregnant, that are safe during pregnancy, they still can affect your baby once your baby's earth-side with you. And that's something that I did not know and was so, like, scared to find out after I gave birth. And then the last one is breastfeeding. That is, like, the major one. Don't put the pressure on yourself. If you want to go back on medication after pregnancy, don't feel guilty about it. Do what's best for you as a mom, so that you can be the best version of yourself and feel good and strong. And there's a fourth one, OK, sorry. (laughs) Resting. Resting is not guilty, don't feel guilty about it. If you need to rest, rest, so you can be strong for tomorrow. 

Cristina Schaefer: Well, you saying the piece about resting hits home with me so much. One of the things that I've learned is to let go a little bit, not feeling guilty about it and not feeling guilty about resting. It's OK that I haven't vacuumed the house, because I do need to just lay down for a minute. We're just going to raise our babies the absolute best we can, no matter what, given the tools that we have. And that's OK. Then just…  and I think that's my third one, is just remembering it's all going to be OK. Everything's going to be fine, no matter if you gave them the wrong formula or fed them something you weren't supposed to feed them or they had a reaction or what... Everything's going to be OK at the end of the day. And I think that's an important thing for every parent to remember. 

Natalie Decker Lemke: And there's another thing I want to add is: Don’t be afraid for asking for help or when someone's offering to help to let them help out. Because I know, like, a lot of moms put pressure on themselves to do it all and always be there for their child, but they're not going to remember that one time that you might need to step away or do something else mentally for yourself. Going into pregnancy and going into postpartum, I kept telling myself, like, "Don't worry, and don't feel bad about accepting help or asking for help." And I really believe that is a reason on why I feel so good and so confident as a first-time mom is: Because when I have to step away, I'm like, I'm not going to let it get to me and emotionally affect me, and that it's good, and I should be proud of the support system I have around me and happy that I have that. 

Cristina Schaefer: And not to feel guilty for letting people help. Because I know in my experience, those grandmas love to step in whenever I give them the chance to. 

Natalie Decker Lemke: Exactly. 

Cristina Schaefer: But sometimes I would still feel guilty, or say to my husband like, "Oh, I feel bad that I had to ask them for help." And he's like, "Stop that. You know that they want to help." 

Natalie Decker Lemke: Yeah. 

Cristina Schaefer: So, like you said, being proud of that village you surrounded yourself with. 

Natalie Decker Lemke: And just think, your babies are growing up with so much love around them then. It's not just always mom, or mom and dad; there's multiple people that are spilling love into their lives, and that's what's so beautiful about it. 

Cristina Schaefer: Well, Natalie, this has been such a great conversation. And I'm so glad that both of us, us two moms, got to sit here and discuss this. And hopefully other moms can take away from this, or people who are thinking about starting a family can take some good pointers away from this and just remember some of the things that we shared today. 

Natalie Decker Lemke: Yes. I had so much fun chatting with you. Thank you so much for having me on. 

Cristina Schaefer: Well, that's it for this episode. For more arthritis resources, educational opportunities and information about family planning and more, remember, you can visit arthritis.org. 

PODCAST CLOSE: Thank you for listening to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. Get show notes and other episode details at arthritis.org/podcast. Review, rate and recommend us wherever you get your podcasts, on Apple, Spotify and other platforms. This podcast and other life-changing Arthritis Foundation programs, resources and services are made possible in part by generous donors like you. Consider making a gift to support our work at arthritis.org/donate. We appreciate you listening. And please join us again!

https://www.arthritis.org/liveyes/podcast/episodes/two-moms-on-starting-a-family-with-arthritis