Supporting Baby Steps: Being Gentle with RA Newbiesby Cathy Kramer Patient Advocate
My right hand no longer makes a fist. Despite physical therapy and regular use of rheumatoid arthritis (RA) medications for seven years now, my fingers lost full ability during my years without conventional treatment. Now that medications have controlled my RA, I’m often asked if I regret the two-year drug gap I took. My answer is always: “No!” It was a process I personally needed to go through before I could comfortably accept medications into my life.
Since medications have stabilized my RA, it is easy to want others to skip the difficult years and get right on a medication plan. In fact, a month or so ago, my brother sent me a message asking for my personal blog. His neighbor was newly diagnosed and plans to give holistic treatment a try. I was happy to share my story with natural medicine, but almost heard the words: “Please, get informed about medications also,” come out of my mouth.
I stopped before saying those words because I know that during a time in my RA history, they wouldn’t have benefitted me. For some of us, starting out strong with medications from the very beginning makes sense. Others need time to absorb all that is happening to their bodies and require a slower introduction to medications, and another group is not open to medications at all. They need to try a variety of nonconventional remedies.
So, how do we go about supporting newbies, especially when their path differs from our own?
Slow down. Our community has a wealth of knowledge, but many times we scare people off with too much information too quickly. In our quest to help, we often miss out on what newbies need or provide more than they can absorb. Remember, sometimes all that is needed is a sympathetic ear.
Ask questions. Rather than immediately giving out great advice, ask questions. Find out what it is your new RA friend really needs. “How can I be a support to you?”
Give space to grow. A diagnosis of RA is never easy and we all need time to figure out who we have become now that we live with a chronic illness. For me, it meant I tried everything I could before finally integrating medications and lifestyle awareness. Allow people time to work through their individual values, needs, and experiences before judging their methods, knowing this may be a temporary phase.
Be kind. Unfortunately, this must be said. While my experience of trying different approaches has been fairly positive and well supported, I have seen others in this community belittled for being where they need to be on their journey and therefore left alone without community support. Remember the old saying: “If you don’t have anything nice to say, don’t say anything at all.”
Newbies, we know the first years can be tough.
Research. While it is important to follow your heart, research both sides of the conversation. Sometimes going blindly into alternative methods can have unwanted side effects. For me, acupuncture caused more pain than relief.
Get feedback. Use social media to ask how others responded to a treatment you are excited to try. There is so much knowledge within our community.
Know when you’ve had enough. Learn everything you can about RA but also know when you’ve had enough and step away.
Know your own body. When it comes to your body, you are the expert … always. Learn from others but remember they have a unique story that is different from yours.
Be open minded. In the early years, it is common to feel you can easily handle your RA with a few tweaks. If you can, I applaud you. However, be open to the idea that at some point, not using medications can be a side effect to living a life you don’t enjoy. Continue talking to your healthcare team. Read posts from people in the RA community who have had success with medications. I am proof that they can work.
Whether you are a newbie to RA or you have been at it for years and want to share your expertise, remember to be gentle and take baby steps with yourself and others. We are not all at the same place in how to treat our chronic illness. Personally, I will forever be grateful to RA friends who left kind comments during phases of my RA development that differed from their own. By supporting each other where we are on our own journey, we allow each other to contribute and grow together as a community.
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