Health

Caring for Rheumatoid Arthritis Patients

Roughly 1.5 million Americans have rheumatoid arthritis, an autoimmune inflammatory form of arthritis (x). If you’ve been following me for a while on the blog or on social media, you know that I’m one of them. This is a staggering amount of people to have this specific form of arthritis, but here’s the other statistic: if every single one of those 1.5 million people have 1 person who cares about them, that’s 3 million people affected by RA. And that’s a low number, as hopefully everyone has multiple people who care about them. But this is just referring to people who care about people with RA; what about the caregivers, those who are caring for rheumatoid arthritis patients, assisting them with things? I’ve written a lot about RA information and a lot of resources for patients, but today I wanted to use my “expertise” of living with RA for 17 years to help the caregivers out there.

Are you caring for rheumatoid arthritis patients? Here's what you should know from the perspective of one, as well as some resources.

Caring for Rheumatoid Arthritis Patients

We will feel RA in ways other than pain – Obviously pain and joint inflammation are the most common symptoms, but it isn’t the only way that patients experience RA. We can also experience morning stiffness, fatigue, fever, eye dryness, gum irritation, lung inflammation, and loss of appetite, among other symptoms (x). Additionally, it can lead us to develop other illnesses. I personally have developed anemia of chronic disease/inflammation, fibromyalgia, endometriosis, and POTS. Not every patient is going to develop other conditions, but I’ve met enough who have to know that it’s a distinct possibility. So if the patient you’re caring for starts to experience other symptoms, they can’t be ignored.

It can be scary – And that brings me to this point: living with a disease like rheumatoid arthritis can be super scary, especially if you begin experiencing symptoms at a young age. We have no idea what our futures will hold. With there be treatments that work in our future? Will we have access to them? On the tough days, I hold onto the fact that I hopefully have 50 more years on this earth and there will be huge advances made in that time. But that’s just a hope: I have no proof that advances will be made that will help me. I try not to think about that, but sometimes I do.

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Our medication can give us not-fun side effects, including weight gain, nausea, and irritability – I don’t think I’ve ever met an RA patient that has never been on methotrexate. Methotrexate – or MTX – is a weekly medication that is a form of chemotherapy, and it is NOT fun, and the side effects include nausea and headache. (For what it’s worth, I stopped taking MTX because my quality of life from the side effects was worse than my quality of life from the arthritis, which is saying something.) Additionally, we are often prescribed prednisone, also known as the predmonster. To be completely honest, if I take more than 8 mg a day, it makes me a hungry bitch. Like, I once mentioned to a co-worker that I was excited to reduce steroids so that I would be a hungry bitch all the time, and my co-worker didn’t contradict me.

It can be hard to think long-term about life due to not knowing where we’ll be in 10 years or more – Compared to when I was diagnosed in 2010, my health is worse in some ways and better in others. I’m like many people in that I have hopes and dreams for my life, but when I think about where my health will be based on how it has changed in the last 8 years, it can be difficult. Will I ever achieve my goals? Do I need to make new ones? This means that I don’t always like to think about my life 10, 20 years from now. If I’m not in the right mood, it hurts emotionally.

We might need to change our lifestyle – When I think about my life now compared to what it was like when I was diagnosed, it’s shocking. I rest a lot more, as my pain is significantly worse if I get less than 7 hours of sleep. I got to the chiropractor every week. I changed my diet, as it turns out certain foods trigger my RA symptoms. I wear KT tape a lot. You can read more about the changes I made here, but essentially, there are things other than medications that we can try. It is important that you run these changes by your doctor, though, as they can guide you in the safest way to make changes.

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We feel guilty – I feel so guilty about how my illness has affected my family and friends. I feel guilty that we have to plan family activities around my health. I feel guilty that I’ve missed out on things. I feel guilty that meals have to be cooked around my food sensitivities. And the media doesn’t help! I don’t know if you’ve seen the commercials for Enbrel, but they featured family saying “my mom/dad is back to being my mom/dad again!” I understand the meaning behind it, but portraying relationships as centering around what the patient can provide others is hurtful. We feel guilty enough as it is.

We don’t always want to ask for help – I hate asking for help. I want to do things for myself, especially because there are a lot of things that I can’t do for myself that I used to be able to do them. So sometimes we might need you to offer before we accept. Another alternative is to talk to us about what we might need so that we can do something for ourselves. If we have better grips to hold onto cooking tools, can we make a meal by ourselves? Sometimes, making these changes can help us be more independent, which can make us feel better about ourselves and help you not to do as much.

1.5 million Americans live with rheumatoid arthritis. Here's what you should know for caring for one. Click To Tweet

You need to take care of yourself – Take care of yourself! Get lots of sleep, go to the gym regularly if that makes you happy, make sure you see your friends, go to therapy, etc. No matter what level of caregiving you practice, you need to make sure that you take care of yourself, for yourself and for the patient, but more for yourself. It’s okay to be frustrated! (As long as you don’t take it out on the patient, obviously.) It’s okay to be sad, to feel drained, to be stressed. Take care of yourself.

What works for one patient (or even many) might not work for us – The last thing I want to say is that rheumatoid arthritis is a tricky disease in that what works for one patient doesn’t work for others. So don’t hang your hopes on the latest diet, medication, alternative treatment, etc. It’s okay to want the patient you’re caring for to feel better. That’s normal! But I have met so many other people with rheumatoid arthritis and what makes one person feel better can not work for another or even make another feel worse. So keep this in mind, for your sake and for the patient’s.

Here’s another reason why: Do you know how many times I’ve heard the phrase, “Have you tried [x]?” It’s probably in the thousands over the last 17 years. And almost every time, it’s something that I have heard of or even tried. It is so frustrating to take to a person I’ve never talked to before or met a handful of times try to offer me medical advice. Again, 17 years of arthritis pain. For every suggestion, I’ve tried it, my medical team doesn’t think it will work for me, or my medical team thinks it will harm me. It’s very frustrating.

Resources

There’s a lot of things people need to know about rheumatoid arthritis that they don’t currently. To help with that, I made this infographic.

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Looking for more information? Here are some more resources:

Why rheumatoid arthritis is hard to diagnose

How to help someone with RA

Problems I’ve dealt with and how I’ve dealt with them

A beginner’s guide to seronegative rheumatoid arthritis

What you need to know about arthritis

So someone you know was diagnosed with rheumatoid arthritis

Additionally, the Arthritis Foundation and the Arthritis National Research Foundation have a lot of great information and resources!

Do you have any questions about rheumatoid arthritis? Ask them below in the comments!

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What Is the Difference between Osteoarthritis and Rheumatoid Arthritis?, 10 Things I Wish I Knew When I Received My Rheumatoid Arthritis Diagnosis,

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