Thoughts For People Newly Diagnosed With Rheumatoid Arthritis: Part 1
If you were recently diagnosed with rheumatoid arthritis, I wouldn’t be surprised if you were scared, mad, frustrated, anxious, and overwhelmed - sometimes all in the space of ten minutes. Maybe there is a bit of relief that you finally have a name for the crazy symptoms that have been disrupting your life.
Support when newly diagnosed with RA
I’m sorry you have to join this club, but I can assure you there are a lot of us out there, and we are generally a very supportive bunch which leads me to my first thought...
Find a good support system that doesn’t include your loved ones. This may be strange advice at first, but the reality is that your loved ones may be just as scared and upset as you are. They are feeling helpless and highly concerned. They want to be there for you, but often working from their own emotions, they will be prone to do things like helicopter parenting (even if you are 46 years old), being a bit bossy, or not being available to you at all.
These are all coping mechanisms and, frankly right now, you need all the strength you can get without using up your precious energy helping your helpers to feel better. That can come later, and they will be fine. The last thing you need right now is to be yelling at your siblings for telling you what to do.
How to build your RA support system
A support system for you at this point can be found in online groups, support groups, your healthcare team (more about them later), and good friends. Make the effort, even if you want to avoid being around people who are worse off than you because it is scary. I’ve made that mistake and it led to a lot of loneliness.
Let your friends know some of how you are feeling, but it’s okay to keep some things in. I find that on bad pain days, my conversations with friends can turn into worry-fests and that only leads to more worry.
If you have a friend with a chronic illness, that can be really helpful. My friends and I with JRA have an unspoken ease with each other, as do my friends with chronic pain. You don’t need a squad of people - even one will do - as long as that person has the ability to listen without judgment, only chimes in with advice when asked, and can validate your experience. These are the qualities you should look for in any support system.
Find ways to believe in yourself
I wish I knew about this when I was a kid because it would have prevented many really tough emotional years. Growing up, I was surrounded by people who were more competent than me: my best friend was an athletic superstar, my siblings were all incredibly smart, athletic, and popular, which didn’t leave me much room to excel at anything. When I talk to parents of children with JRA, I always encourage them to help their child find something he or she is good at and support them in that thing.
As an adult, you need to do this for yourself. RA will humble you every day, and at times you will be so fed up with yourself that you’ll want to crawl into a hole. But if you have a counterbalance to that feeling, your self-confidence will take fewer hits.
Another thing I do when I’m feeling completely overwhelmed is to read stories about extreme survival- examples of how resilient and strong other people have been in different harsh circumstances helps inspire me to be brave in the face of my own challenges.
I hope you gained a few tidbits from this and be sure to look out for Part 2 of this article!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?