I first started having rheumatoid arthritis (RA) symptoms as a young adult. I noticed mysterious pain and swelling in my feet and hands, so my mom took me to my primary care physician to try to figure out what was going on with my unbearably painful joints. I can still see myself sitting up on the exam table as my doctor told me she thought I had RA. My grandmother had severe RA, and I grew up watching her struggle with the extreme pain from her symptoms.
As I heard my doctor suggest an RA diagnosis, I was both shocked and devastated, and images of my grandmother’s bent and disfigured hands appeared in my mind. I asked myself, would my hands end up like hers? With my mom sitting next to me, trying not to look heartbroken, tears began to roll down my face. I was referred to a rheumatologist right away, which then began my RA journey and the rollercoaster ride of living with chronic pain and illness.
Managing RA symptoms like joint pain, swelling, and fatigue can make daily activities difficult and exhausting. However, this is only part of the struggle. I have also found managing the emotional and financial aspects of my RA to be just as challenging.
“Emotional support is critical when living with RA, and one of the true gifts of the social media age is the reminder that you aren’t on this journey alone.”
Finding Emotional Support
When I was first diagnosed, my rheumatologist focused on finding the right treatment for me but did not prioritize my emotional well-being as part of my disease management. Social media didn’t exist at this time, and I wasn’t aware of any resources or peer support groups for someone my age. I remember searching on my own and finding a support group sponsored by a large arthritis organization, but I was the youngest person in the room by about 40 years, so it was hard for me to connect with others. I only attended that support group once, and left the meeting in tears, feeling incredibly isolated and alone.
Several years after my diagnosis, online RA communities and social media were on the rise, and it became easier to find the support I needed. Once I grew more comfortable with social media, I started an RA blog and spent more time on sites like Arthritis.com. I was able to fill the void of loneliness that I struggled with for years by building a community of support and friends through these platforms. Emotional support is critical when living with RA, and one of the true gifts of the social media age is the reminder that you aren’t on this journey alone. Talking to others who can relate to you and understand your experiences with RA is important.
Navigating the Financial System
Sometimes, the emotional toll associated with RA has nothing to do with mind and body, but everything to do with the financial impact of having the disease. I recently vented to my mom about the added stress of spending hours on the phone being transferred to different departments within insurance companies to ensure my care and medicine were covered.
Learning to navigate the complicated healthcare system is admittedly stressful, especially when living with a chronic condition, but there may be help available to you. I always recommend communicating with your healthcare team about your insurance and any financial concerns you may have. Your care team can help you get potential assistance through tools like patient assistance programs. My rheumatologist’s nurse also recommended that I consider assistance from the manufacturers of my medications. She even helped me navigate my insurance and pre-authorization processes to get the medication and treatment I needed.
I won’t sugarcoat it: RA can be a difficult diagnosis to process. But this disease has taught me to be resilient physically, emotionally, and financially. I am lucky to have emotional and financial support systems and the knowledge to help me navigate through my RA journey. While I don’t know how RA will impact my future, it helps me appreciate the present. Living with this disease has pushed me to find ways to still live my life the way I want, to the best of my ability.
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