How to Navigate Your Social Life With RAby Efstathia Koliopoulos Patient Advocate
When diagnosed with a chronic illness, such as rheumatoid arthritis (RA), we are offered different ways to manage the disease. The first line of defense is usually a piece of paper with a prescription medication scribbled on it. One thing that we aren’t sent home from the doctor with is a prescription for how to navigate our social lives, which can be just as impacted by the disease as our bodies.
It can be isolating when people around you don’t understand how RA makes it difficult for you to keep up socially.
"Since my diagnosis, I have gone through my fair share of social stages, from social butterfly to complete hermit." -Effie Koliopoulos, Blogger for Rising Above Rheumatoid Arthritis
Even though the doctor and nurse practitioner suggested I see a social worker to guide me through the initial stages of the diagnosis I didn’t feel like adding this to my medical “to-do” list, giving me even more stress and anxiety.
Instead, I looked up stories of people living with RA and read message boards. After time, I opened up and started having conversations with people about their journeys. I came to realize this community of RA and chronic-illness warriors was my source of social support. The saying: “The best teacher is someone who has walked in your shoes,” holds true when it comes to finding emotional support of any kind.
Since my diagnosis, I have gone through my fair share of social stages, from social butterfly to complete hermit.
I had no choice but to get creative in how I coped with various social scenarios. I created a list of tips to use in situations when you are not sure how to react or advocate for yourself.
Tip 1: Embrace the “air hug”
This a good method to use when your hands aren’t up for firm handshakes and your body is having a bad day. Creating a bit of humor with a non-physical version of this everyday interaction can take the pressure off you. The next time you are meeting with your boss, a co-worker, family member, or friend who loves to just squeeze the life out of you, tell them it’s an air hug type of day.
Tip 2: Let go of FOMO (fear of missing out)
The unpredictable nature of RA can already cause anxiety. Add in a social event that we want to attend but don’t know if we can, and it can be downright paralyzing, especially when we know we’ll be recovering for five days after. The notion that life is short has everyone wanting to do everything and be everything at once. That’s when FOMO happens. Taking care of ourselves means we have to simplify and be picky with our time here on Earth — it’s important to create lasting memories, not just lots of memories. Sometimes it just has to be a Netflix and wine kind of night, and that’s okay.
Tip 3: Get comfortable with saying no, but not too comfortable
Saying no is good at times to prevent burnout. Setting boundaries with RA is crucial to maintaining your sanity and physical wellbeing. Many people see the cleaned up version but not what happens before. There is what I call a “good amount of prep work” such as taking a nap, a hot shower to loosen up sore muscles and joints, icing painful joints, taking pain medicine, eating before we leave our homes or preparing a meal to bring with us if we have food intolerances and sensitivities. Like I said, there can be a good amount of prep work to actually get ready for a social event when you have RA. This is why a lot of us say no to begin with because it will just be too much for our bodies to handle. There must be moderation and balance. If we say yes all of the time, people take advantage. If we say no, people will stop inviting us out altogether.
Tip 4: Enjoy your alone time
Rest, reflect and recuperate.
These three words are key. In order to be present in any social setting, we sometimes need to step away and just do our own thing. Doctor appointments, treatments, and managing medications can leave us feeling exhausted. It’s important to take time to get back to center with whatever relaxes us.
Tip 5: Stop caring about what others think. Own it!
Being self-conscious about your condition in a social setting with new people is normal. Do you hide your “problem joints” because you don’t want people to see them? Do you use your assistive devices around people who know you well, but avoid doing so around new people? Do you act like you can keep up for fear of not wanting to be a drag? It’s not worth it to not be yourself.
It is my hope that in times of feeling misunderstood, alone, isolated, and experiencing FOMO you can find the courage to speak your truth, stand in your power, have more confidence, and live a fulfilling social life. Good relationships, lots of laughter, love, and most of all, support are well worth it.