1 in 4 Americans have a form of arthritis and 1.5 million Americans live with rheumatoid arthritis specifically. Rheumatoid arthritis (also known as RA) is a form of autoimmune arthritis, meaning that it’s an autoimmune disease rather than wear-and-tear. This is the form of arthritis that I have, and as you guys know if you follow me on Instagram, I’ve been talking about arthritis for all of May because May is Arthritis Awareness Month. While sharing my experience living with RA, I actually got a message from someone who is the child of an RA patient and I was asked if I could write about how they could help their parent. I’m more than happy to do that because I know that there are way more than 1.5 million Americans who are affected by RA. If every RA patient has one person who cares about them, that’s a total of 3 million Americans affected by RA, and most people have way more than one person who cares. I hope that this post helps all of you who are affected by RA although you don’t have it.
How To Help Someone with RA
Seek education – It is exhausting to have to educate people all. the. time. I’ve been diagnosed with arthritis for almost 8 years and been living in pain for 17, and I still get comments like, “But you’re too young for arthritis!” and “How could you be in pain so early in life?” Not only is it tiring explaining how they’re wrong on a regular basis, but it’s emotionally painful to have to explain the truth about rheumatoid arthritis all the time. On the one hand, I want my loved ones to understand what’s happening to me. On the other hand, I don’t want to spend all my energy educating people. It means a lot to me when people have looked for information on RA on their own and makes me feel relieved. And in 2018, there are so many wonderful online resources! The Arthritis Foundation has a page explaining RA, as well as all the other forms of arthritis. The Arthritis National Research Foundation also has an explanation of RA.
Offer to help, especially in specific ways – It’s always very lovely when someone offers to help me “if I ever need it,” but I rarely take them up on it because I don’t want to impose and I don’t know how much they’re willing to help. They’re much more likely to agree to your help if you offer it in specific forms, like cleaning the kitchen, doing laundry, going to the grocery store, carrying a box, etc. Additionally, though, if someone says that they’re okay and don’t need your help, let them be. There are plenty of things we can’t do, so we might really want to do something for ourselves, especially if we’ve been through a rough time recently and weren’t able to do it. For example, I recently attended the HealtheVoices conference, and while there I rented a scooter because I’m still on crutches. This meant that I was able to do things for myself for really the first time since my surgery, including get my own meals and refill my own coffee. There were a lot of very kind people at the conference that offered to help, but some insisted on helping even when I told them that I didn’t need it. It felt very infantilizing, like what I said didn’t matter and that I couldn’t possibly know what I could and couldn’t do. Don’t be like that!
Adjust your expectations – People with RA often can’t do as much as healthy people. How different they are depends on the individual case, not only because someone might have low disease activity and someone else may have high disease activity, but also because what makes one person feel better can be what makes someone else feel worse. Now that we’ve gotten that out of the way … Basically, know that we might have to take breaks more often or be unable to attend events based on how we feel. It is never a reflection on you or an event (unless the RA patient doesn’t like you, but considering you’re reading this post, I doubt it). It will help massively if you adjust your expectations of what we can do, as we often don’t have control over how we feel and we feel bad enough for canceling plans. Additionally, keep in mind that many factors can affect how we feel, including the weather, traveling, overdoing it, etc. So if we just flew into town and you expect us to do immediately do a full day of activities, you’re going to be disappointed. In a personal example, I am always better in the morning and get worse from late afternoon on. My family knows that I am much more likely to be able to attend events in the morning than I am in the evening. We therefore try to schedule family activities earlier rather than later so there is less of a chance that I’ll have to cancel. To learn more about how our energy and pain affect the day-to-day, check out the spoon theory.
Offer to do activities together that they are likely to be able to do – This is similar to the previous item. One way to adjust your expectations is to stop or reduce suggesting you two do things that they are not likely to be up for and to instead suggest something that they likely will be. This way, they don’t have to say no quite so often, and you can still spend time with them. It also doesn’t put so much pressure on them to have to suggest plans that they can do instead of the ones that you offer.
Take care of yourself! – This might mean physically or mentally, but essentially, don’t overwork yourself. Take breaks from helping us if you need to. Practice self-care. Basically, don’t empty yourself trying to pour into us. I always feel bad when my family spends a lot of time helping me – especially as I’ve been recovering from surgery – and I worry that I’m taking too much from them. So take care of yourself!
Get involved in arthritis organizations – It means so much to me when people get involved with arthritis organizations – like the Arthritis Foundation and Arthritis National Research Foundation – and especially when they get involved with my fundraising activities. If they ask for donations to an organization, you can donate or share. If they’re looking for people to join their Walk To Cure Arthritis team, join their team. Basically, get involved.How to help someone with rheumatoid arthritis Click To Tweet
What other questions do you have about arthritis and/or rheumatoid arthritis?
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