A portrait of RA advocate Carla.

My Life with RA: Carla Kienast

Our Editorial Team spoke with Carla Kienast, an advocate for the RheumatoidArthritis.net community who has been writing about her rheumatoid arthritis (RA) journey since 2014.

Carla was diagnosed with RA in 2008. Many of her articles reflect on her lived experience with the condition, ranging from multiple treatment plans, various surgeries, and improving awareness about RA.

In this interview, we talked to Carla about her work in RA advocacy, both on and offline, and how it played a role in helping her cope with the chronic condition.

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An interview with Carla Kienast

RheumatoidArthritis.net: What was your experience with or knowledge of RA prior to your diagnosis? Was there an aspect of the RA that was challenging to adjust to?

Carla Kienast: I was aware of RA, but certainly not knowledgeable. I knew it wasn’t osteoarthritis and I knew (from watching television) that there were treatments available. I immediately did a ton of research (and probably overreacted to all of it).

Then, as now, the most challenging aspect for me is that there is no cure (yet). It can be incredibly discouraging to know that I’m not going to “get over it.” I have lots of great days (and weeks, and even months), but I know that can change at any moment. My RA diagnosis changed my view on life.

RheumatoidArthritis.net: You have been an RA advocate for some time now. What was the most important lesson that you have learned while participating in RA advocacy?

CK: I learn something new almost every day – not only from medical news and sites but especially from people’s stories about living with RA.

To me, the most important lesson is that everyone with RA is an advocate. There are as many kinds of advocates as there are people. There are those who are their own advocates at home, work, and in the doctor’s office, and others who testify in front of the Senate.

The patient’s voice drives change, improves healthcare policy, creates treatment plans, and expands awareness. I truly believe advocacy is just a name for what we each do every day and it reaches from the doctor’s office to the White House.

RheumatoidArthritis.net: You’ve written about a variety of topics on the site, but one recurring theme that we’ve seen in your pieces is about advocating for your RA treatment or open communication with your healthcare providers. What recommendations do you have for people who may be hesitant in talking to their doctors about their RA care?

CK: Managing RA isn’t a once-a-year visit with your doctor for a physical – it’s an ongoing conversation that will last a long time. Talking with a doctor can be difficult.

So how do you make hard things easier? You use a tool. Today there are many great tools that can ease that conversation – like phone apps that track symptoms. I use something very simple: a list I give to my doctor at the start of the appointment. Mainly it’s to make sure I don’t forget something, but it’s also to give my doctor an overview of what I want to talk about. Sometimes I number the list or break it into parts like “information” and “issues”.

You should decide what you need from the visit – to discuss an issue, change the treatment plan, or just do an update. This strategy lets you “ease” into the conversation with a statement like, “What I need to talk about today is …”

The main thing is to be open and honest with your doctor so you both understand what’s going on with your health. This actually becomes easier as you build your relationship with your doctor – which is one of the single most important things you can do to help manage RA.

RheumatoidArthritis.net: Many community members find it challenging to manage the ups and downs of RA. How have you managed to cope or stay positive during challenging times?

CK: Honestly, like anyone else, there are times I haven’t coped well at all. But there are things that can make things easier.

The first, which I can’t do without, is community, like the resources available and connections you can make through RheumatoidArthritis.net. There is a lot of strength in being able to find answers, learn how others have handled similar situations, or simply to vent, knowing that other people really understand.

RA affects all aspects of your life and it can complicate all of them. When I’ve faced challenges, I’ve learned to control what I can and ask for help when I need it. One of my mantras is, “This, too, shall pass.” I just had my fifth joint replacement in 11 years. I was upset when I first got the news about another major surgery.

However, I believed it was the right decision and that my life would improve because of it. The faith that things can get better (regardless of what those “things” are), along with support from the RA community and my husband, helps me through the tough times.

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Click here to read about Carla's RA journey throughout the years.

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