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in Health · May 14, 2018

Helping Someone with RA

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.

All posts about arthritis

1.5 million Americans have RA (rheumatoid arthritis), and even more than that care about someone who has it. If you're one of them, have you ever wondered about how to help RA patients? I've lived with it for nearly two decades, so I'm breaking down the different ways that you can help.

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.

Loving someone with chronic pain

6 different ways that you can help someone who lives with RA (rheumatoid arthritis).

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.

So someone you know was diagnosed with inflammatory arthritis

Please consider donating to my Walk To Cure Arthritis fundraiser!

What other questions do you have about arthritis and/or rheumatoid arthritis?

Like this post? Share it, and then check out these:

 My Rheumatoid Arthritis Treatment + How I Got There, 5 Items Every Immunosuppressed Person Needs, A Guide to Chronic Illness for Those Who Don’t Have One, What You Need To Know about Arthritis

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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    […] Helping Someone with RA, Hacks for Living with Chronic Condition, Resources for the Freshly-Diagnosed Chronic Illness Patient […]

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  2. Kate the (Almost) Great | Boston Lifestyle Blog - Why Is Rheumatoid Arthritis Hard to Diagnose? - Kate the (Almost) Great | Boston Lifestyle Blog says:
    August 7, 2018 at 6:31 am

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Having decades-long health problems sometimes mean Having decades-long health problems sometimes means coming across something in your health history that you completely forgot about⁣
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Here are some ways I practice self care, aka talki Here are some ways I practice self care, aka talking care of myself AND who I am as a person separate from illness⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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What I Bring To the Doctor _______ Video: a pa What I Bring To the Doctor 

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Video: a pan of an exam room. White text reads “What I Bring To the Doctor ” and the “1. Planner/notebook
2. List of current medications 
3. Notes on my biggest concerns and questions 
4. My kindle for wait time” 
The intro to Maroon 5’s Priceless plays. 

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1️⃣ She’s married!! ⁣
2️⃣ She married the best person in the world for her!!!!!⁣
3️⃣ I got dressed up! ⁣
4️⃣ The reality of doing fun things with chronic illness and pain is that then you have to recover from the fun things. It took … a while. One million percent worth it, but this is why I don’t do big events on a regular basis. ⁣
5️⃣ And then I had to be a person again for an appointment!⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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On the one hand, you should always believe what pe On the one hand, you should always believe what people tell you about their bodies.⁣
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On the other hand, I’ve had so much ridiculous and unconnected health things happen that I do understand why people might not believe me.⁣
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⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣I’m Kate, a chronic illness patient and advocate. Follow me for more content for chronic illness patients and their loved ones!⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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Last week, I talked about how it surprised me how Last week, I talked about how it surprised me how systemic autoimmune arthritis can be. But something else that surprised me was how much pain can be caused by small things.⁣
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In this picture, I was getting ready to have an MRI on my knee. It has been bothering me a fair amount the last 6+ months, so I'm trying to do something about that. ⁣
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Unsurprisingly, some of the tissue is damaged, but it's not bad. What's probably causing it to bother me so much is a teeny tiny cyst. ⁣
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Baker's cysts are a type of cyst in the knee that are generally caused by arthritis. But having a cyst in my knee means that it's causing pressure on that damaged tissue. ⁣
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The body is a weird thing, and one of these weird things is developing tiny cysts that cause a lot of pain. ⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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2️⃣ … Which means I am overheating! ⁣
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If I met my newly diagnosed self for coffee ... ⁣
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I tell her how things would get worse before they got better. ⁣
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I'd tell her to stop eating gluten, dairy, corn, soy, and eggs immediately (although that would have been a lot harder in 2010, more than it even is now). ⁣
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I'd tell her that she still needs to keep advocating for herself. ⁣
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I'd tell her that having a diagnosis unfortunately doesn't mean everything automatically falls into place. ⁣
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I'd tell her that she'll develop many more illnesses but her quality of life will actually get significantly better. ⁣
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I'd tell her that she would eventually have to get her right foot fixed, although she does expect that.⁣
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I'd tell her that using a cane is not a sign of failure, but a tool to make life better.⁣
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(I did a sort of tongue-in-cheek post about this a while ago and thought I'd post a more serious one).⁣
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The thing that surprised me the most about autoimm The thing that surprised me the most about autoimmune arthritis is how systemic it is. ⁣
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Like with most things, it's one thing to know the fact and it's something else to experience it. ⁣
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Yes, my joints are affected (a lot). ⁣
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But I've had enough serious infections thats I have to see an immunologist because we need to be aware of my antibodies and I sometimes need help recovering from illnesses. ⁣
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And, yes, I see pulmonology because of my asthma, but we also have to keep an eye out on developing rheumatoid nodules in my lungs. (So far so good!)⁣
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Not to mention that, when I developed POTS, the hospital admitted me to run every heart test to make sure that, at 26, I wasn't experiencing heart failure. ⁣
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Plus, when I developed endometriosis, I also went through a number of GI tests because one theory was that I had ulcerative colitis. ⁣
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Anyway, RA is so much more than "just" joints. If it wasn't, I wouldn't have to kill my immune system every 3 months like I am in this picture.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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