Half full? Half empty? Graphic
Credit: Tatiana Ayazo

I like to think of my journey with rheumatoid arthritis (RA) as an epic television series, with a dramatic plot twist at the end of every season. I could tell you in many Hollywood-esque ways how my life was before, during, and after my diagnosis of RA. As with any great television series, there would be loss, grief, recovery, and inspiration.  

When you are first diagnosed with RA, it turns your world as you know it upside down. Sometimes you’re fully aware of what is lost at the time, but then sometimes you don’t really notice until time has passed. I lost a lot when I was first diagnosed with RA, but looking back, I really gained so much more than I had ever lost. I would like to share with you my losses and gains through my life with RA. 

My Physical Activity

At the time of my diagnosis, I was very athletic. I played golf and tennis regularly. I enjoyed running and lifting weights. When my joints first became swollen and tender, I could no longer strike a tennis ball or hold a golf club. Running was absolutely out of the question in the beginning because of my horrific foot pain. My hands limited me on the amount of weight I could grasp, too. 

With these changes, I was forced to find ways to stay active that were different from what I already knew. I found peaceful morning walks and a yoga app on my smartphone to be my salvation. I also found handy products that help to modify gym equipment and make exercising easier all around. The regular exercise I engage in today is much more sustainable to maintain as I grow old. I am thankful that RA forced me to re-design my exercise habits in a way that I can stay fit and also challenge myself day-to-day.  

My Sex Life

The first loss I experienced after being diagnosed with RA was no longer being able to engage in intense, high-energy intimacy with my spouse. Some positions were simply no longer possible. Lucky for me (and him) sex is a part of life and humans are driven by instinct.  

We have worked together and found new ways that work. This forced us to talk about something I don’t think we would have really talked about if it weren’t for my diagnosis of RA. We have also discovered the power of skin-to-skin contact and so many other ways to be intimate beyond sex. Unexpectedly, RA made intimacy even better for both of us.  

My Writing

To stay organized, I’ve always kept notes and lists for shopping and chores. I also kept a lot of notes about upcoming events and things to look into at a later time. Additionally, I really enjoyed journaling through my adolescent and young adult years.  

When I was first diagnosed with RA, I could barely hold a pen. This forced me to look into new typing technology, portable and lightweight electronic devices, and the myriad of voice-to-text programs that are available on today’s market. When these electronics are not available, I have found pencil grips and larger sheets of paper (no more post-its!) to be very helpful. I now have helpful ways to record words more efficiently than I could previously write them. This has, in turn, allowed me to grow my business and work smarter, not harder.  

My Diet

When I was first diagnosed with RA, I found diet to play a huge role in my symptom severity. I love Hot Cheetos, apple fritters, Now and Later and Good & Plenty candies, milkshakes, fried chicken, and Coke so very much. For a long time, I continued to eat these foods in an effort to rebel.  

After finally realizing that I can control what I eat, and this could actually help me feel better, I changed my everyday diet to a modified Mediterranean diet. My symptoms dramatically improved within a few weeks. I had more energy, less brain fog, and I even lost significant weight. The diet changes I made were truly better for my overall health. RA forced me to eat better. I no longer eat like a college kid in a dorm room, but I have fresh fruits, vegetables, lean proteins, and I eat mindfully. Thank you RA for forcing me to eat like a mature adult. 

My Fashion Sense

When I was first diagnosed with RA, jeans were impossible to zipper or button. The thought of wearing denim jeans would send me into a paralyzing panic attack. Because of this, I started to explore other clothing options. I started wearing a lot more stretchy and pull-over-the-head dresses. I never realized how uncomfortable jeans really are before I changed my wardrobe to mostly dresses.  

Also, with dresses, you don’t need to match or pair anything because it’s already an entire outfit. Now I am known for my extensive wardrobe full of dresses and I’m usually quite comfortable. RA has allowed me to expand my wardrobe and even have a personal, branded style.  

My diagnosis of RA came with significant loss. Several years later, I can proudly say I have gained more than I lost. I am a better person because of the things that RA took away.  

Become a Patient Advocate

One of the best ways to help people understand the challenges of living with a chronic illness is to raise your voice by becoming a patient advocate.

The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.

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