Like most small children, I didn’t have a firm grasp on the intricacies of rheumatoid arthritis. I knew that both my mother and her mother had it, but the way my grandmother said it with a thick Eastern European accent — “Arthur Itis” — led me to believe that it was a man named Arthur who was responsible for their pain.
As I got older, I gradually understood more about the condition, and how it meant that sometimes my mother’s body would hurt so much that she wasn’t able to get down on the floor to play with me. And how it was also the reason why I’d be asked to prepare a warm foot bath for my grandmother at the end of the day.
But it wasn’t until I was nearing adulthood that I saw the other side of rheumatoid arthritis (RA). Yes, it was the cause of my mother’s joint pain, but that was only part of the story. As it turns out, she hid the rest of it — like the fatigue, weakness and mental health impacts — from me for years, explaining that she didn’t want to give me something else to worry about.
After our role reversal, when I became the caregiver, I tried to keep in mind that RA was much more than sore joints and not being very mobile in the morning: It required another level of patience and understanding to ensure she was getting what she needed. If you’ve found yourself in a similar position, here’s what to know about caring for someone with RA, including insight from caregiving experts, physicians, and an occupational therapist.
Respect the person’s pain
This sounds obvious: Of course you know the person you’re caring for is in pain. But Nicole Brackett, care delivery and education manager at Homewatch CareGivers, says that there’s more to it than that. “As an in-home caregiver for someone with RA, it is important to understand that pain from arthritis can be very debilitating,” she tells SheKnows. “It’s also important to advise people to ‘respect pain,’ as pain is a red flag that tries to get our attention so that we can address whatever is going on.”
Understand that RA is more than joint pain
At the same time, Dr. Saurabh Srivastav, a physician and co-founder of Dr. Arthritis, says that it’s important to be mindful of the fact that RA isn’t “just arthritis,” and can impact several areas of a person’s body. “In fact, it frustrates RA patients to no end when people assume that their illness is simply a problem with joints,” he tells SheKnows. “Yes, RA first affects your joints, but it can also affect your organs.”
In addition to that, both RA itself, as well as the medication to treat the condition, can cause debilitating fatigue and brain fog, insomnia, weight fluctuation, and other symptoms on top of the chronic pain. “RA creeps into every inch of your way of life and it can make a lot of patients feel isolated,” Srivastav explains. “Understanding just how much of an impact RA can have on someone’s life will help you become a more compassionate caregiver.”
Because the symptoms of RA can differ from day-to-day, it’s important for caregivers to actively observe the person’s level of discomfort. “People with RA need medication to relieve the pain and be taken promptly,” Raymond Dacillo, director of operations at C-Care Health Services, a Canadian home care provider and healthcare staffing agency, tells SheKnows. “Caregivers need to pay attention to how much pain people with RA deal with daily to determine how much rest or exercise they would need that day.”
Along the same lines, Brackett advises that caregivers for people with RA should regularly check the weather: “Both heat and cold can impact well-being depending on the person, so be sure to look for patterns and how to create comfort levels when temperatures swing,” she notes.
Caregiving will take different forms
According to Dr. Janelle Laughlin, a UCHealth rheumatologist in Longmont, Colorado, people caring for those with RA should recognize the need for support on multiple levels. “For example, patients may need tools in the home for success such as wider grip cooking utensils, handle type door knobs, and removal of rugs that could cause falls,” she tells SheKnows. “RA patients struggle more in the morning with stiffness and pain, so making appointments or scheduling tasks may be more effective in the afternoon.”
Working with an occupational therapist may help
Because RA impacts nearly every aspect of a person’s life, sometimes they may need additional assistance performing certain everyday tasks — or at least pointers for accomplishing them that match their level of mobility. That’s where an occupational therapist (OT) can come in handy. “We specialize in helping people figure out how to accommodate for the difficulties in life, so you can live life,” Dr. Brandy Archie, occupational therapist and founding director of AccessAble Living tells SheKnows.
And you don’t have to wait to see an OT until a person’s joints are so deformed that they need splints. “The total body impacts might make simple things harder, like the ability to see the board in the classroom, or having the energy to complete a shower, leave the house, or be able to function in a hot, humid climate,” Archie explains. “OTs can help find ways to make those things easier again.”
RA is a chronic condition with sporadic, sometimes sudden changes in symptoms — and those caring for RA patients need to be aware of that. “Caregivers need to give their loved ones some grace,” Laughlin explains. “One day they may seem perfectly fine. The next day they may struggle with a basic task. The variability and unexpectedness of flares can be very frustrating for patients and family members, as it disrupts normal routine. Understanding the need to be flexible is important, because RA is a long-haul disease.”
When it comes to people with RA, Laughlin says that “motion is lotion” — meaning that those who are active tend to be better off in the long-term, “so encouraging physical activity is recommended.” One way to do this, Dacillo says, is to join them in their exercises and stretches: “When the caregiver participates with them, it encourages them to do physical activities to help reduce the pain.”
But at the same time, remember that RA patients have good days and bad days. “As much as you want to see patients move and remain mobile — which actually helps a lot with RA — try not to push them too hard,” Srivastav explains. “On good days, it’s easy for them to overexert themselves, and when they do, it will inevitably lead to a very bad day marked by pain and fatigue.”
Encourage use of tools and aids
When caring for someone with RA, Brackett says that it’s important to encourage the use of assistive devices recommended by physical and occupational therapists in order to help them maximize their independence, while avoiding unnecessary strain on their affected joints.
“A lot of RA patients, especially ones who have just been diagnosed, tend to avoid using tools and aids because it amplifies the idea that they are disabled,” Srivastav explains. “Try to help normalize the use of these tools. You’d be surprised at how much a simple knee sleeve can help maintain mobility during the day, or how sleeping with a pair of compression gloves can minimize wrist and hand pain in the morning.”
Don’t forget to take care of yourself
When you’re so focused on taking care of someone else, it can be easy to neglect your own needs — but doing that doesn’t help anyone. “Being a caregiver for someone with RA can be challenging,” Brackett says. “It can be very stressful, resulting in feelings of sadness, losing sleep, or even suffering physical ailments such as headaches. This condition requires not only physical support, but also emotional support ensuring that the person living with RA is relaxed, comfortable and staying as positive as possible.”