For as long as I can remember, my grandma has been living with Rheumatoid Arthritis (RA). When I was younger, I didn’t really understand what RA was…I just knew that she was in pain at times and that certain daily chores were harder for her to do. I’d watch my mom help her with things like opening containers and cutting up food. I’d see her massage my grandma’s hands but it never really occurred to me what was really going on until I became an adult myself. As I began to understand the impact that RA has had (and continues to have) on my grandma’s life, I was deeply moved at the strength and determination she has shown, for years now, in her struggle with RA. Even more than that, as I became the one to offer assistance for her at times, I discovered that when helping someone who is living with RA, there are a few tips that help caregivers be supportive while still giving their loved one the independence that they long for.
To better understand what my grandmother was living with, I needed to understand RA. Most of us have heard the term multiple times but it took me doing a little research to actually learn what RA is. As a chronic inflammatory disorder affecting many joints, including those in the hands and feet, RA is treatable but not curable and can often be painful for sufferers. Once I understood the condition, it was time to take a look at how I could help.
Be Willing to Listen
Growing up with a grandmother that has RA, I’ve learned that sometimes all it takes is listening to better understand what it’s like to live with RA. I’ve learned that pain levels can be different on different days. I’ve learned that the effects of RA can present themselves differently in different individuals. I think the fact that my grandma was a nurse for many years makes it often harder for her to express her pain in a way that we understand. But even when I don’t totally get what she’s saying, simply listening can make a huge difference.
Almost all RA sufferers agree or strongly agree that it’s frustrating when others can’t understand their level of pain and a big part of understanding is allowing a loved one to actually talk about what they are experiencing! Once they have been able to verbalize what their symptoms feel like and why living with this disease frustrates them, it’s easier as a caregiver to understand their pain.
Understand Their Pain
According to the Honestly RA survey conducted by Regeneron and Sanofi, eight in 10 people living with RA report that they experience pain daily or multiple times a week. For those of us who live a fairly pain-free life, it’s hard to imagine being in daily pain, on the level to which RA can cause those affected by it to suffer. It’s often easy as someone who doesn’t suffer from RA to forget that pain has an impact on the daily ability to live life. By understanding that even after treatment, nearly two-thirds of RA sufferers say their pain keeps them away from daily activities and celebrations (according to the survey), I’m able to more fully understand how greatly RA impacts my grandma’s daily life.
That way I’m able to take small steps to help her be able to do the things that she wants to do. While I know that having to do daily tasks differently in order to manage her pain can frustrated her, I know that simply offering understanding and solutions helps her find new ways to live life to the fullest.
Don’t Take Away Their Independence
Having RA often impacts the daily tasks that a person can do. Pain changes activity levels and the ability to perform certain everyday activities. However, I’ve discovered with my grandma that while she needs occasional help, she wants her independence. She’s lived a life doing things by herself and one of the things that frustrates her most about RA is that it robs her of the ability to do some of those things. For me, it’s hard not to jump in and just take over so that she doesn’t have to do certain things. But for her, accomplishing everyday goals that many of us often take for granted (like cooking and cleaning) helps keep her feeling independent.
While certain tasks may take longer and may be a little more difficult, I’ve found that it’s best not to step in and help until it’s asked for. I make sure she knows that I’m more than willing to help but that I also know she is still able to accomplish things on her own. By allowing her this independence, I’m supporting her and offering assistance but still understanding that there are certain things she’s not willing to give up for RA, now or ever.
Make Sure They Have the Right Doctor
A big part of living with RA is coming up with a treatment plan that works. Just as each person is different, treatment plans are different as well. According to the Honestly RA survey, on average, people living with RA have used 4.1 different prescription medications over a span of 5 years. While this is admittedly a lot of trial and error, 85 percent of people feel that their treatment has helped them be more in control, despite having a chronic condition. But, in order to find the solution that works for them, they must communicate with their doctor and go to scheduled appointments regularly.
According to the survey, more than nine in 10 RA sufferers say doctors are their top source for support and information, so finding a doctor that they can communicate with efficiently and that is willing to listen and make adjustments until they find the right regimen is essential. Keep in mind that a loved one living with RA may need help getting to their doctor’s appointment or may simply want support along the way.
In all honestly, I’ve never know my grandma when she didn’t have RA. I’ve seen the chronic condition progress over the years but I’ve also seen her fight to not only live with it but to live well with it.
While I now understand what she deals with daily in a whole new way, I’ll probably never fully understand what daily life is like for her. However, I’ll try my best to ensure that when she needs help I’m there, when she needs understanding I’m ready and when she simply needs me to listen, I can. If you know or care for someone who is living with RA, discovering more about how they feel on a daily basis is essential to providing the care and support they need. Be sure to check out the information below for more statistics from the Honestly RA survey.
Then start finding small, daily ways to not only understand what it’s like for a loved one living with RA but to also offer support and help in the ways that they need most!
Tell me, do you know anyone who is living with RA and how do you offer support and care?