Newly Diagnosed With RA? Common Concerns and How They May Change
Cathy Kramer | July 12, 2017
Reviewed by Diane M. Horowitz, MD on Aug 27, 2017
A diagnosis of an autoimmune disease such as rheumatoid arthritis (RA) can set off a wide range of concerns. While you may feel completely alone as you try new medications and learn all about your condition, it may be nice to know that those who have lived with an autoimmune diagnosis for some time also experienced similar fears at first. For the most part, they now see their disease in a new light.
The statistics of RA
With a diagnosis of RA at 56, Carla says she “became fixated on the statistics of people being disabled.” On the very day she was diagnosed with RA, she began measuring the doorways in her house to verify it could accommodate a wheelchair.
Not letting RA define you
Today, Carla is now in her 60s. She views her journey with RA as “just part of my new norm. Like everyone else, the norm changes as life moves on.” Carla found a treatment plan that controls many RA symptoms. “I certainly don’t define myself as my disease. I am a person. I have RA,” says Carla. “I also have a cleft chin and a few pounds too many, but those things don’t define me either.”
Asking for help
Wendy, currently in her mid-40s, was diagnosed with psoriatic arthritis around age 35. Wendy had to cut her work schedule to part-time and become choosy about which activities she commits to. She has also learned a lesson that is hard for many: how to ask for help. As a single mom with a house and pets to care for, Wendy says she depends “heavily on my daughter to help me around the house and anyone else I can to help.”
Be gentle with yourself
Early after a diagnosis, it can be difficult to know where to start with all the new information about your condition. After the initial shock, you may find yourself more like Wendy, who says “I have more long-term concerns now: risk of medications, worsening of the disease, ending up in a wheelchair, being completely dependent on someone else.” Be sure to share these concerns with your rheumatologist.
Am I a burden to my family?
At 34, Karen (now 40) had a 2-year-old and a 10-month-old when she learned of her RA diagnosis. “I worried I would never get better and that I wouldn’t be able to be a proper mother to my kids — and that my husband would only see me as a burden.”
Appreciate what you can do today
Not knowing what the future holds with RA is still a fear for Karen, but she now sees her RA as something that reminds her to take it easy and not overdo it in life. She has learned to “appreciate what I can do today.” And those early worries about being a good mother or a burden to her husband? “My children are extremely compassionate. My husband supportive and loving,” Karen says.
Will I move ahead professionally?
When Amanda, 37, was diagnosed at age 26 with RA, worries about the future consumed her. “I thought I wouldn’t progress professionally because of it. I know now that isn’t true.”
Looking forward with RA
Today, Amanda has accepted her RA and no longer panics. “My biggest concerns now are what does retirement look like for me, how do I plan for that. Also, I’m 37 but would still like a family. What does that look like?” she says. “Instead of thinking that these things won’t happen for me, I see it more as how do I modify these things to align with my goals. So, I view things more from a far-off perspective vs an immediate.”
Allow time to adjust
When you are first diagnosed, no matter what the age, it may seem that your life will now be consumed by your disease. It takes time to learn all that encompasses an autoimmune disease, and to find the treatment plan that works best for you. Be gentle with yourself as you navigate through this journey. Over time, as your treatment starts working and you adjust, your condition is more likely to become a part of your daily routine and you can focus on everything else in your life.