Living with Rheumatoid Arthritis: Reflections on Life, Pain, and Resilience

Over the past few years, in living with Rheumatoid Arthritis (RA), I’ve been faced with many hurdles. I've decided to share my story and some things I’ve learned along the way. I hope that it might resonate with some of you who are faced with chronic illnesses and encourage you to keep moving forward on your journey of resilience.     

Understanding RA 

Rheumatoid Arthritis is a chronic autoimmune disease that affects the joints in your body. It causes inflammation, pain, and stiffness, oftentimes making it challenging to move around. I was diagnosed in my mid-20s. Many people are surprised to learn that I have RA because they think I'm too young to have it, and they are even more surprised to learn that I've been living with RA for over 15 years. But the truth is RA can affect anyone, regardless of age. 

I have learned to expect the unexpected. No two days are the same, and I have to be ready to roll with the punches. Some days, I feel like I'm on top of the world and can conquer anything, while on others, it’s a struggle to simply get out of bed. I’ve had to change how I face the world and, even more importantly, how I face myself. Here are some of the ways I’ve learned to make the best of a difficult diagnosis.   

Changing My Internal Dialogue 

For a long time, I was my own worst enemy. I would beat myself up for being unable to do things others could do effortlessly. I would push myself too hard, ignoring my body's warning signs. I would compare myself to others and feel like a failure. And guess what? My RA symptoms got worse. 

One of my most critical changes was changing my internal dialogue. It's easy to get caught up in negative self-talk when living with a chronic illness but I've learned to be gentle with myself and focus on what I can do rather than what I can't.  

Getting Outside 

I’d never been what one might consider the outdoorsy type until I was diagnosed with RA. I quickly realized that gentle exercise was crucial in managing my condition, so I decided to leave my comfort zone and begin exploring the great outdoors. At first, I was hesitant. The thought of walking on uneven terrain or climbing steep hills seemed daunting, so I started with paved trails, and when I felt ready, I moved to nature trails. With the help of adaptive gear like trekking poles and supportive shoes, hiking became a true passion of mine. 

Getting outside has been a game-changer for my RA. It's a reminder that despite my body's limitations, there are still ways to adapt and enjoy life. When I walk through the woods, I feel a sense of liberation. The fresh air, the calming sounds of nature, and the gentle exercise not only work wonders for my arthritis, but it's been a saving grace for my mental health as well. 

So, if you're in a similar situation, I encourage you to step outside and see where it takes you. Who knows, you might surprise yourself. 

Adapting My Kitchen 

Since being diagnosed with RA, one of the biggest challenges I’ve faced is spending time in my kitchen. Cooking is a longtime passion of mine that once brought immense joy. However, I found it increasingly difficult to manage. My hands were the first to display deterioration at the joints, and with that, cooking became frustrating and intimidating.  

I was determined to find a way to continue my favorite hobby, so I persevered. Now I can’t say that it was as simple as changing my mindset as my physical space required some adaptations too and let me tell you... that was not an easy decision to make. I had to really put my pride aside and admit that I needed help doing even the simple things in the kitchen. I switched to lighter cookware with helper handles and gave up my once beloved cast iron. I purchased adaptive utensils that assisted me in opening jars, bottles, and cans. I also bought tools that helped reduce knife work needed during prep. The most significant addition to my kitchen and has had the most significant impact is a rolling stool that allows me to sit during meal prep.   

These changes have helped me continue to enjoy cooking despite my rheumatoid arthritis. It hasn't been easy, but with a few adaptations and some creative problem-solving, I've been able to create a kitchen that works for me. 

Finding a Care Team of Experts, I Can Trust 

In the beginning, I believed I could manage my disease on my own, and I cannot stress enough how wrong I was!  You don’t have to fight chronic illness alone, so don’t!   I changed my lifestyle habits and fought alone for years before finally admitting to myself that I was sicker than I cared to admit.  

It was a big step to seek help and honestly was the best decision I’ve made yet on this journey. Today I have a care team that includes a primary care doctor, a rheumatologist, a chiropractor, an occupational therapist, and a massage therapist. They each have their own benefit in helping me manage my RA symptoms and have drastically improved my quality of life!  

An RA diagnosis isn't easy, and you learn to face each day as it comes. Remember to be kind to yourself and gentle with your body’s limitations. Living a whole and happy life with this chronic illness is possible but you must give yourself grace and time. Many resources are available to help manage your RA, and it’s important to ask for help when needed. Together, we can support each other and thrive, despite our disease.