Ask Our Health Leaders: How to Get Through the Worst Days

Living with rheumatoid arthritis (RA) can be an overwhelming journey filled with physical and emotional challenges. The daily battle against joint pain, fatigue, and uncertainty can leave some people feeling isolated and disheartened.

For many, the RA community is a safe space to turn to when support is needed from other people who understand what life with a chronic illness is like. With this in mind, we asked our Health Leaders a simple yet powerful question: "If you could say just one thing to RA community members struggling right now, what would you want them to know?"

Encouragement for difficult times

If you’re going through a tough time right now, we hope their responses offer encouragement, hope, or comfort.

You are enough

Janeil Whitworth: I guess I would say the same thing that I like to hear from the people I love and respect when times are difficult: Your best is good enough. You are good enough as you are.

I think when you live in pain, you also live with guilt that you are not capable, energetic, social, helpful, successful, lovable, [fill in the blank] enough as everyone else. You feel as if you are always trying to play catch up, but pain acts as a roadblock to be enough. This entire belief couldn't be further from the truth. There is so much about that will always be enough.

Your thoughts, emotions, and feelings are valid

David Advent: To anyone who is struggling right now, I want you and your pain to feel validated. I know that it's tough; RA is a horrible disease and something I would never wish upon anyone. Whatever you are feeling, whatever you are thinking, however your body is feeling, know that you are valid in how you feel and that you will see this pain through.

RA pain can feel insurmountable, especially in a flare. In my personal experience, there are days when I'm in a flare and don't have enough energy to even get a cup of coffee (sometimes it's even difficult to pick up a cup in the first place). Even though it makes me incredibly frustrated, I've had to learn how to work with my body instead of working against it.

If I can't get out of bed today or can't move around, so be it. I just can't. If I have enough energy and lack of pain to exercise, then I will do that. By being more attuned to my body, I've been able to work with my RA pain instead of dreading it, hating it, and letting it control my life. If you're struggling right now, know that this pain is transitory and that you have the agency to take back control of your life away from RA.

You are not your disease

Lynn Marie Witt: Any community members out there who might be struggling right now, I want you to know that YOU MATTER! Rheumatoid arthritis makes living our daily lives very unpredictable. The disease is far more than physically debilitating and painful. It deeply and negatively affects our work, social, and family lives.

This has deeply affected my mental health at times. However, I have learned through the years, that I am not my disease. You are not your disease. When you find yourself surrounded by a society or a people group who don’t get it. Reach out to our RA community. Here you are seen as more than someone with rheumatoid arthritis. This is a safe place where your experiences and your life journey are valued. Don’t ever forget how special you are!

Lean on us for help

Amanda Osowski: You are not alone. I know those can feel like just words on the screen, but I mean it. This community is here for you. If you're struggling, think about making a post on the website or on our Facebook page reaching out to other people with RA who are struggling or who have struggled. Ask for whatever you need – suggestions on how to manage whatever facet of this disease is getting you down, validation that it's really really hard sometimes, empathy, compassion, connection – I bet this community might surprise you.

Also, give yourself grace. Living with RA is HARD. Some days are manageable, and some are not. Even the longest-standing patients need to remind themselves of that. I know I sure do. So, practice kindness to yourself. And take things one day, one hour, one minute at a time.

Share your thoughts

What are some of the best words of encouragement you've received during an especially difficult time? Is there anything you'd like to add to what our Health Leaders said? Please share your thoughts with us in the comments below!