Everyone responds differently to information about their health. After learning that you have rheumatoid arthritis, you might be stunned, scared, or even relieved to have answers that explain symptoms like painful joints and limited mobility. No matter what you’re feeling, you’re not alone. On myRAteam, there are thousands of others who have been in your shoes.
“I was diagnosed at the end of last month and I’m [having] difficulty adjusting to my new normal,” shared one myRAteam member.
“I know it can be scary and difficult,” responded another team member, “but I will say find out as much as you can about this disease, ask questions, and above all, surround yourself with people who understand and care.”
|Are you living with RA?|
What helped you through your initial diagnosis period?
Click here to share your suggestions in the comments below.
You can’t figure out everything about RA at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.
It’s normal to feel out of control when you first learn you have RA. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.
Storing all of your printed doctors’ visit summaries and pamphlets about rheumatology, blood tests, biologic medications, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system — a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, controlling clutter may also improve your mood.
Keep a list of questions about RA handy — whether they’re about symptoms, such as joint damage, or treatments, like medication side effects. You can use the list to create a dialogue with your health care provider. Jot down your questions as you think of them. Bring your list to your appointments, so you can remember your questions when speaking with your rheumatologist.
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your new doctor’s visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone calls or text message reminders that can help you keep on top of appointments.
Using an old-fashioned pill organizer is a great way to keep track of an oral medication regimen. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication tracking app to manage your treatment schedule. This can be particularly helpful if your treatment regimen involves nonoral medications like injectables.
Reaching out for help after receiving an RA diagnosis can feel overwhelming, but you don’t have to face your diagnosis alone. Support from loved ones, your medical team, and other people with RA is crucial as you embark on a treatment plan and adjust to your new normal. There are several resources you can turn to as you start building your network of support.
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or feel comfortable joining an in-person support group. That’s OK. Connecting with members on myRAteam can be a first step toward finding support. Your community on myRAteam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with RA or want to celebrate a victory.
“I didn’t and don’t know that much about RA, and this group is teaching me,” wrote one myRAteam member. “I’m newly diagnosed and trying to learn all I can,” shared someone else.
Members also encourage one another to try new things to help manage their symptoms. “Some days aren’t great, but I try to stay positive and take care of myself with diet, exercise, and attitude,” wrote one myRAteam member. “Feel free to reach out any time and stay confident.”
Learn more about getting support online for rheumatoid arthritis.
Many hospitals and medical practices offer resources that extend beyond your medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.
Sharing your RA diagnosis with friends and family can be hard. They may be afraid and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that involves helping with household chores or offering a listening ear.
You might not have known much about RA before your diagnosis, but now you probably want to learn more. Your health care provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your health care provider or patient liaison if you have questions about something you’ve read.
On myRAteam, the social network for people with rheumatoid arthritis and their loved ones, more than 170,000 members come together to ask questions, give advice, and share their stories with others who understand life with rheumatoid arthritis.
Are you living with RA? What helped you through your initial diagnosis period? Share your suggestions in the comments below, or start a conversation by posting on myRAteam.
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