How to Ask for Help When You Have RA

A rheumatoid arthritis (RA) diagnosis can be life-changing. Fatigue and joint pain can make it more challenging to take part in your favorite activities. You may have to come to grips with being on medication long-term. And you might need more support than you’re used to, which can be an uncomfortable feeling if you really value your independence.

But as the old saying goes, it takes a village — and not just to raise a child, but also to thrive as an adult, especially with a chronic condition like RA. Find out how your village can help support you, and learn when and how to ask for the support you need.

RA can lead to physical, mental, and social complications. To manage these, you might feel like you need more support than you did in the past. When you feel this way, take the opportunity to reach out for help in the following areas:

Physical Tasks

The chronic pain and constant fatigue that RA can cause make it hard to do all sorts of tasks. These include the day-to-day activities you may have taken for granted in the past, such as your ability to bathe, dress, eat, and use the toilet, says Ashwini Nadkarni, MD, an assistant professor of psychiatry at Harvard Medical School.

The condition often first affects the hands and feet, and involves particular stiffness and soreness in the morning. So, you might specifically have trouble with a.m. tasks like brushing your teeth, holding your coffee cup, or getting dressed, says Stephen Lindsey, MD, a professor of medicine and the interim section chief of rheumatology at LSU Health New Orleans School of Medicine.

Without treatment, RA can progress. And that makes it harder to do tasks that involve your hands, like sewing, writing, using your computer, and driving, Dr. Lindsey says. Depending on the severity of your RA, these are all activities you may one day need some additional support to carry out.

Doctor Appointments

Whenever you’re meeting with a healthcare provider about your RA, you might want to consider bringing a trusted supporter along with you as a second set of ears, says Nichole Davis, MPH, founder and CEO of Wayfinder Patient Advocates, and author of Patient Advocacy for Dummies.

Providers may use terms that you’re not familiar with, or they may spark questions that you’re not able to ask in the moment. Your loved one can help by taking notes and speaking up on your behalf — as needed and to whatever level you feel comfortable with.

They can also help you ahead of time by working with you to prioritize the questions or topics that you want to address with your doctor. Plus, they can help you prepare a list of questions to bring with you to an appointment, so you get the most out of your often-limited time with your provider, Davis says.

Emotional Support

Coming to terms with your rheumatoid arthritis doesn’t happen overnight. It will likely take intentional work on your part, and you might also want to lean on others.

“Someone with RA may need support to validate the frustration they’re experiencing with the adjustment to the disease and the impact on their life and functioning,” Dr. Nadkarni says.

Social and Professional Responsibilities

As both your physical and emotional needs change, you might find that you need more help in your social and professional lives, Nadkarni says. Navigating your needs for this type of support might include “finding ways to cope with distress, practice self-care, and identify motivation and encouragement to maintain independence and social connection,” she says.

Your need for additional support may be getting increasingly difficult to ignore. But that doesn’t always make it easy to ask for the help you need.

Shame is a key barrier for many people with RA. “Shame is the negative judgment people experience when they feel they haven't lived up to their expectations,” Nadkarni says. Some people might feel ashamed, embarrassed, or bashful to even broach the subject of help, because they feel they should be able to accomplish tasks on their own.

When something is hard, many people feel like they have to tough it out and handle it on their own, Davis says. “It can be difficult to feel like you suddenly need help,” she says. And that stops many people from asking for the support they need. “It’s not weak to ask for help,” she stresses. “Needing accommodations doesn’t mean that you’re incapable or less valuable.”

Coupled with shame is often some fear, whether it’s a fear of the condition itself or of looking silly in front of others. Lindsey calls this the “insecurity of the person who has a diagnosis who doesn't want to act stupid or act like they don’t know what’s going on.”

In some instances, a lack of support is its own barrier to asking for help. “People might not have family or friends who they can turn to,” Nadkarni says, so they don’t speak up.

Lastly, some people simply don’t know how to ask or what to ask for, she says. In that case, it’s important to get really clear on what it is you need and who you need it from.

Once you’re ready to advocate for yourself, where do you turn next? Here are some expert tips.

1. Get Specific About What You Need

“Understanding what your needs are is key,” Nadkarni says. Without this clarity, you may find yourself stuck not knowing what to ask for or who to turn to for support. “One person might be looking for emotional support, another might need help around the house,” she says.

Spend some time thinking about what would help you most and who is the best fit to deliver that kind of care. Then ask them to pitch in. “Being open and honest is key,” Nadkarni says.

This process isn’t always easy, especially if you feel overwhelmed and aren’t sure where to start, or if you aren’t well-versed in the types of support you might want to ask for, Davis says. A patient advocate, either made available to you through your doctor’s office or hospital, or hired independently, can help you sort through some of this, she says. “What I do is not just care navigation within a hospital, [it’s also] trying to figure out how you can find the right courses of action for you,” she says.

2. Shift Your Mindset

If you’re struggling emotionally with what it would mean for you to ask for more help, reframe how you’re thinking about support.

Instead of thinking, “This is something I need because I can’t do X, Y, or Z anymore,” say to yourself, “This is something I need to be well,” Davis says. This small shift alone can be a “game-changer” for your mental well-being when it comes to asking for help, she says.

3. Tap Different People in Your Support System

You can find different types of support from different groups of people, including medical professionals, support groups, community services, and friends and family.

“People often instinctively turn to family and friends. This makes sense especially if you have family or friends to lend a kind ear, help with specific tasks, or offer encouragement and companionship,” Nadkarni says.

But if you don’t have those kinds of bonds, “or you're experiencing a greater intensity or specific type of need, support groups or mental health support can help,” she says. That’s especially true if you’re specifically looking to meet other people with RA who can better relate to what you’re going through. “In this instance, support groups provide a shared experience, reduce isolation, and empower people,” she says.

If your mental health is getting worse, think about trying one-on-one therapy. It can be especially helpful if “the psychological challenges of living with RA are creating an intensity of distress, impairing your functioning, or even affecting the outcomes for your RA,” Nadkarni says.

4. Tell a Less-Intimidating Professional

If you feel a little nervous about talking with your doctor directly about the support you need, you could mention your concerns to an office manager, nurse, or physician assistant who you encounter ahead of your appointment, Lindsey says.

All you have to say, he adds, is something like: “I'm kind of concerned about this. Would you let the provider know?” Then, when your doctor is ready to see you, “there's an agenda already,” he says. And that removes some of the friction of asking for help.

5. Write a Script

Once you’ve identified who you want to ask for help and what you want to ask of them, consider writing out how you plan to ask them. You can go into as much detail as you might find helpful. This way, you’re not relying on your own brainpower to remember every little detail, in case you show up to the conversation more drained or foggy-headed than you’d hope to be, Davis says.

6. Role-Play Asking for Help

After you come up with your script, practice it. Running through your script ahead of time can help you feel more comfortable and at ease in the moment, just like it would if you were prepping for a big job interview or a toast at a loved one’s wedding.

“Being able to run through it kind of shakes off those jitters,” Davis says.

7. Accept Offers of Help

Sometimes people in your life will make it easy on you and offer their assistance without you even having to ask. But this isn’t always any easier to accept than asking for help directly. Your initial reaction might be to tell them you’ll be fine and you don’t need their help.

But if you’re starting to realize that your RA is making certain things more difficult, “then take them up on it,” Lindsey says. Respond graciously with something like: “I really appreciate that. I’m having difficulty getting my groceries or taking the dog for a walk.” Now you’ve given them a simple idea for a way to pitch in, he says.

8. Show Your Appreciation

When you do receive help from someone, let them know you value them. “I would be effusive about how much you appreciate it,” Lindsey says. It will help them know what an impact they had, which may encourage them to keep showing up.

If you’re feeling up for it, you can work on finding ways to reciprocate with small actions. See if there are little things you can do for them, he adds, to remind you that your relationship is still a two-way street.

9. Keep at It

While it’s easy to get discouraged along this process, try to keep standing up for yourself as much as you can, Davis says. If you aren’t getting the clarity, support, or answers you want along the way, keep asking new people in new ways until you’re satisfied, she says. You deserve it.

• Rheumatoid arthritis can make it harder to complete daily tasks, which might mean you need to ask for help from professionals, family members, and other support systems.
• Asking for help can bring up feelings of fear, shame, embarrassment, and loneliness. But working to overcome these barriers is worth it.
• Identify what types of help you need and the best people to provide those kinds of support. Ask politely but directly for what you need, and respond graciously no matter the outcome. Continue to advocate for yourself until you have the support you need, whatever form it may take.