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.
