That RA Business, Aunty, Is No Joke
I’ve been following RheumatoidArthritis.net for over a year now. It’s interesting to me how many times the same threads come up. I realize that, while my path is unique, our concerns are the same:
- Other people’s understanding of RA
- Frustrating times leading to a diagnosis
- Communication with medical providers
- Fears about medication vs hope they will work
What is especially ringing true for me right now is how my Peeps (my people, friends, and family) respond to me. The first thing I want to share is a message I received, a reminder we do have “civilians” on our side.
“That’s legit… the nature of RA… inflammation and how it correlates together with stress on your body cannot be minimized…That RA business, Aunty, is no joke.”
The peeps in my life
There are supportive Peeps in my life. These Peeps are wonderful and loving! They try very hard, they believe me, want to understand, want to help me, want me to feel better, and be more active and live the life I dream of. Even though they can’t know exactly what I’m going through, they try really hard!!!
My husband recently told me: “I know you have more pain than you tell me. I know you have harder days than you talk about. I notice that you seem to toggle between OK or bad. That you’ve adapted to your condition better - more than your condition has gotten better.” If I’m honest with myself, even with my closest Peeps:
I filter what I tell them because I don’t want them to hurt for me…
Instead of specifics, I’ll say “I’m having more pain today.” “My hip is bugging me.” “It’s a low energy day.” On a really bad day, with a chuckle, “I hit the wall."
My Peeps respond in their own ways. It is hard when someone important to me responds in a way that disappoints me. I feel guilty using the word disappoints, but it rings true. I have always had a tendency to “overshare”. I talk a lot! Meaning when people ask me “How are you?”, it may become a conversation. This isn’t always great.
One of my closest Peeps finds a way to end conversations when I talk about my RA. End the phone call, change the subject or “I gotta get going” and physically leaving. In the past, we’ve had a wide-open, talk-about-anything relationship. Not now. I know they always love me dearly. Yet I worry that they think I’m a whiner? That I am boring?
Or, is it actually really painful for them to hear about my pain and limitations?
We’ve supported each other through so many other very, very difficult times. I’m not going to lose our friendship over this. I’ll just be careful how I approach RA with them. I believe as time moves on, this part of our relationship will evolve because that is who we are.
Some of my Peeps, as many of you have shared, “Just don’t get it.” Compare my RA pain to, what seems to me, their minor aches and pains.
* BUT WAIT - How can I judge or compare their symptoms to mine? It’s real and affects their daily lives. I can’t walk in their shoes. WHOA, it is easy to judge other’s pain…
The hardest one is the Peep who avoids acknowledging the RA altogether.
* I know they don’t want to believe it’s real because they don’t want it to be real.
It is a measure of their love for me and the vulnerability they feel for me and themselves. It breaks my heart a little.
I am asking myself how or what do I share? Who with?
Do I continue to send out group text updates after my doctor’s appointments? We are a medical family, so my assumption has been that it’s good to share the clinical info. Some reply and others don’t. I don’t know how to interpret that. Maybe, with some of my Peeps, clinical isn’t the way to go? Should there be no sharing, unless they ask? Do they need to know that I’m trialing my 3rd biologic and the first one by infusion? And that it scares me? That it’d feel really good to have someone volunteer to be with me for that first 3-hour appointment? It’s not dangerous or urgent to have someone with me, but it would be comforting.
When is it my responsibility to let them know what I need?
I am a Mom, Grandma and Pediatric Nurse. My life is all about raising my family and supporting families. Reaching out to help and comfort others. I know this colors how I interact with my Peeps. I am torn between wanting them to understand and help in my RA life and wanting to be the Mom and Nurse that makes it all okay for them.
* To be completely honest, while I want my Peeps to know and understand, I don’t want it to affect their willingness to call and ask me for help. I don’t want them to feel guilty or sorry for me. I don’t want it to affect all areas of our relationship. Part of me wants to deny that RA affects everything.
There is a lot of soul-searching in everyone’s life, especially if they are facing their own or a loved one's health crisis. What I'm trying to suggest to myself and our RheumatoidArthritis.net community is:
- Look at how you share with your Peeps and what opportunities you give them to understand and help you.
- Be willing to look at where your Peeps are coming from. Maybe they are scared and hurting for you.
- Be aware of who it may be a good time to take a break from.
- Continue to share here, where our paths converge, because
- You have Peeps here
How often you do experience an unexpected boost of energy?