Why — and How — I Made My Own Rheumatoid Arthritis Community

After my diagnosis, I found it hard to talk with my friends about how I was feeling. Creating an RA community helped me find support in ways that I really needed.

There’s something important that doctors don’t always tell you. Something that can leave a gaping wound when you are diagnosed with a life changing condition.

You are not alone.

Four small words that have the power to make the biggest difference.

I felt alone for too long. I didn’t know that there were other people going through exactly what I was.

I was 24 when I was diagnosed with rheumatoid arthritis (RA). Soon after, I began to feel separated from my friendship group. I didn’t want to talk to them about how I was feeling. It was hard to put into words. But I also doubted they would truly understand. I didn’t want them to think differently of me.

As time passed, I focused on adapting my lifestyle so that I could live well with RA. I researched a lot and found myself reaching out to other patients from different social media channels.

The people I met felt like kindred spirits. And I finally felt free to speak my mind.

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The power of community

For millennia, humans have reaped the benefits of community.

The ability to communicate, cooperate, and be social is a key feature of humanity. It’s something that many believe differentiates us from other animals.

Spending time with other people can have positive benefits on our health and even help us live longer.

But more simply, it often just feels good to be in the company of others — especially those who understand you. I’m sure you know the feeling. The feeling of complete acceptance, comfort, and safety.

Since my diagnosis, I’ve made new friendships with those living with RA that have changed my life. I couldn’t be without them. I want to encourage you to cultivate your own RA community. Here’s why:

Confidence

I have spent many years feeling cautious when meeting new people. I feel stressed knowing that my RA will likely come up in conversation. I run through an explanation over and over in my head like a script. I do this so I don’t mess it up when I finally have the courage to speak about it.

Recently, I attended a retreat for women with autoimmune conditions. In this setting, I was free of any social concerns. I immediately felt accepted and knew that I could put my guard down. It was the first time since my diagnosis that I could say whatever I wanted about my experience of RA without fear of judgment.

This freedom was healing for my confidence and self-esteem. I’ve never felt as confident with my RA as I did during that retreat.

Inspiration

Have you ever spoken to someone about a new treatment option or an article you’ve read relating to your illness? Has their response been, at best, patronizing or, at worst, dismissive?

My hope and positivity have been crushed too many times for me to consider asking again. I know people mean well, but my positivity can be a thin threshold sometimes. Ultimately, they just don’t understand.

Imagine having someone to talk to who would value what you’ve found, discuss it with you, and encourage you. You might find yourself more inspired, hopeful, and motivated to live well despite any challenges you face.

In my experience, the challenges feel less and less. I feel inspired to find new ways to live with my RA.

Support

There are so many ideas, tools, and lifestyles that claim to help with RA symptoms. It can feel completely overwhelming to know where to start.

A trusted RA community can tell you about their personal experiences. This can help you narrow down what you want to try and feel supported when you decide to start. You’ll have someone to chat with as you implement new practices in your daily life.

A 2015 study, which investigated the effects of support groups on those living with RA, found that patients indicated an improvement in their quality of life.

Empathy

Unless you have RA, it’s impossible to understand what it’s like to live with every day.  

Your new friends living with RA might have similar schedules to you and prioritize the same things. Most importantly, they’ll understand how important it is to talk to someone.

Being able to message someone, “I’m feeling off. Can we talk?” and knowing the person on the end of the phone will have complete empathy is a game-changer.

Connection

For a long time, I felt like RA was a battle that I had to face alone.

I now realize how damaging this was for my mindset. Feeling isolated can make it really hard to break out of negative thought patterns — you may find yourself spiraling and focusing on the worst-case scenarios with no one to help you rationalize.

The Hospital for Special Surgery in New York ran a study on the effect of free monthly support groups for newly diagnosed RA patients. There were many benefits, and in the category “Connecting with Others,” 77% indicated that they felt more hopeful about their RA because of speaking with other group members. And 89% of the participants agreed that sharing feelings and information with others in the group helped them cope with RA.

The more I’ve connected with other patients, the more I’ve been energized to rise to the challenge of life with RA. When I feel myself going down a rabbit hole of negative thoughts, I have friends who can bring me out of it and make me feel grounded.

Where to start

I hope I’ve convinced you that there are benefits to putting yourself out there and finding your own RA community. But your next question might be — where do I find and meet these people?

Thanks to social media, you have the whole world in the palm of your hand.

• Use the hashtag #rheumatoidarthritiswarrior on Instagram to find people who are talking about RA. Look at who they follow and who follows them to build up a list of people you can find inspiration from. And don’t be afraid to send them a message. Even if they don’t reply — nothing ventured, nothing gained!
• Listen to podcasts hosted by people with autoimmune diseases. Take note of the people they mention in their community and reach out to them. Try “The Wounded Healers” or “Autoimmune and You” if you need a place to start.
• Look into online health coaching or support groups. You will almost certainly meet other like-minded individuals through them. Why not give Cheryl Crow’s Rheum to THRIVE a go.
• Join or start a Live Yes! Connect Group in your area.
• Introduce yourself on the Bezzy RA forums and get a conversation going.

Remember, those living with RA, and other chronic conditions, will be close to home as well. Finding a community doesn’t have to take place online. Make sure to check out any local in-person community groups. These might be advertised in local newspapers or on local Facebook groups.

The takeaway

It may feel scary to reach out to others, especially if being diagnosed has already shaken your confidence.

But an RA community really does have the power to change the way you see your condition. It has the power to change your life — it did for me.