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5 Things I Wish I Could Tell My Younger Self About Rheumatoid Arthritis

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A new diagnosis of rheumatoid arthritis can be overwhelming, even terrifying. I remember when my doctor told me the news. Our first meeting was a blur. We’ll try this, test for that. I remember thinking I would do anything she said – I just wanted to make the pain and swelling stop. I felt like I was constantly reacting to a continuous barrage of changes. Since I had no one to guide me through navigating my disease, I had to learn how to advocate for myself.

If I could go back and guide my newly diagnosed self, there are five things I would tell me:

1. If you’ve recently been diagnosed with rheumatoid arthritis, try to take someone with you to your first few doctor appointments for support and another set of eyes and ears.

Being newly diagnosed can be too much to deal with for someone that’s not experiencing debilitating pain. Adding the agony of rheumatoid arthritis pain to an already frightening situation just makes it that much more difficult to feel clear-headed enough to ask the right questions and get the answers you need. Taking someone with you can help you feel supported, help you process your doctor’s instructions, and remind you to ask the questions that are important to you.

2. Keep a notebook of rheumatoid arthritis symptoms and questions and bring it to each appointment.

Jotting down questions in a notebook as they come up will help when it comes time for your meeting with your physician. Letting your doctor know what kinds of rheumatoid arthritis symptoms you are having will help them determine if a strategy is working or not. Having this information in one location may not only help you feel calmer and possibly in control of your situation, but it can help build a more collaborative relationship with your doctor.

3. For each new rheumatoid arthritis medication, asking a few specific questions can help you and your doctor to find the best course of action faster.

Inquire about how quickly you should feel the full effects. Some rheumatoid arthritis medications take anywhere from weeks to months before a patient gets the full benefits. Ask what time of day to take them (will they cause drowsiness or interfere with sleep?). Should you take (or avoid) any supplements? For instance, taking folic acid when prescribed methotrexate can alleviate some side effects. Side note – before taking any supplements, always check with your doctor first.

4. Keep a rheumatoid arthritis pain journal.

Keeping a pain journal can assist with finding what might trigger or possibly help your symptoms. Recording things like the weather, your diet, sleep habits, stress levels, anything that was different before a rheumatoid arthritis flare can give you clues for the future. I noticed a few triggers while keeping my own journal. As my family is big on tradition, high carbs and high-fat meals during the holidays were the norm. I noticed after a few holiday feasts I was literally laid out on the couch the following day. My hands were swollen, they hurt terribly, and I was exhausted. For the next holiday meal, I added several lighter vegetable dishes and avoided things like high-carb stuffing and mashed potatoes. Thankfully, I began to feel better after these meals and learned a bit about how my body reacted to different aspects of my diet.

5. Learn to say NO to others and YES to yourself.

This one is difficult for many of us. I’ve also found that pushing myself and not getting enough sleep can result in my rheumatoid arthritis flaring up. Working full time, caring for a family, tackling our daily to-do lists are hard enough, but adding an autoimmune disease to manage on top of it all can put us over the edge with obligations. How many times do you say “no” to a request? In my experience, it may be very few. While it feels good to help others, consistently putting others first leaves us little time for ourselves. Doing one small thing for yourself every day can make a world of difference. Taking a walk or just sitting in the sun if walking is not available to you. Listening to music or taking slow breaths for a few minutes can give you a break from all of your daily tasks while helping you to create self-care habits.

In the beginning of my journey, I had no idea what to expect. I felt as though I didn’t know where to turn for help. The stress of managing my rheumatoid arthritis left me feeling alone and lacking in confidence. By attaining these five strategies, I’ve learned how to be more proactive when it comes to my disease. I have learned to create a support system with my doctor, supportive family, and friends not only for those times when my RA throws me a curveball, but for the day-to-day support that we all need. Knowing that there are tactics I can use to help myself and people who encourage and care for me has empowered me while building my confidence and improving my outlook on my life with RA. Yes, there can be a life worth living with rheumatoid arthritis.

Getty image by Nikki Zalewski.

Originally published: March 11, 2022
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