No. 8 - Find Community
This is the eighth of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
When I was diagnosed, I first exhausted everything I could find about RA on the internet. Most of this was information on treatment. It was pretty dry reading and very similar to the printed material my doctor had already given me. Some of it was also scary. The medical and pharmaceutical industries have amazing disclosure regulations and they have to provide information on known side effects – even the extremely rare ones that most people will never experience. Of course, when you’re newly diagnosed, your mind tends to go to worst-case situations.
What I wanted – what I really needed – was what real people with RA experienced. I wanted to know what living with the disease was like – not just what treatments were available. I needed to find a new tribe that could answer questions and not only listen, but understand, when I needed to vent. My husband loves me, but let’s face it, if you don’t have RA, you just don’t get it.
Finding your people
It turned out that the HR director of my company also had RA. Additionally, one of my coworkers was taking the same biologic I had been prescribed for her psoriatic arthritis. While I immediately felt like I was no longer alone, I worked with these people and wasn’t sure I wanted to be sharing my innermost personal thoughts with them.
Thanks to the power of the online information and social media, community is available to anyone with internet access. The fact that you’re reading this on RheumatoidArthritis.net or their Facebook page is proof of that. And with a chronic, potentially debilitating disease like RA, that community support is incredibly important.
I first found a few blogs, then some sites where patients could share their stories. Eventually I connected in other ways and have been able to forge friendships with other patients, bloggers, and health advocates who not only share their stories with other patients, but are working to have their voices heard in areas such as research and health legislation.
I occasionally get asked the question of how RA has made my life better. My initial reaction to this question ranges between rolling my eyes and laughing so hard that I hurt. There are a lot of things I could say about RA but none of them are about how it has made my life better ... except for community. The people I have met because I have RA are amazing. They’re brave and funny and resilient and passionate and compassionate.
Community has, for me, made having an unbearable disease bearable. I treasure the ability to share the burden, laugh at the absurdity of some of the situations you find yourself, and connect with someone who understands exactly why fatigue is different than being tired. With community, you’re not alone. You still have challenges, but with community, you have an army at your back.
When was your last flare?