My new year begins in November.
This is the time when I take a full assessment of the past eleven months of my life before celebrating my next birthday. It is also the time when I make decisions about what is next on my agenda. More importantly, it is the time when I decide what needs to be removed or totally resolved in my mind.
This past November, I made a personal promise to be more bold and brave in a different manner than in the past. Simply by reaching out past my comfort zone boundaries for help.
I am accustomed to being a solo individual. However, I hold a very different position in my immediate family circle. I am my mother’s only child and my dad’s oldest child. I have five siblings.
It has never been easy for me to move between these two lives. My tendencies lean more towards being an only child versus an older sibling. I readily admit that my decisions and movements are based on being totally self-reliant.
However, I found that there are needs that have developed in my life that require me to reach out towards others for support and encouragement.
Having RA has been a real learning experience for me. I have had to adjust to what my body says is for our mutual common good. Actually, I am truly a minority in this aspect because there are not a lot of Black women who have this disease.
Engaging in conversations about aspects of my health with my sista/friends has often left me feeling somewhat frustrated.I decided a while back to be real honest about how I feel when turning down an invitation to do certain activities. Joint pain is not easily relieved with any medication that can be purchased over the counter. I keep my gestation of pain medications to a minimum. I literary take pain meds on an as needed basis because one of the primary characteristics of those medications is sleepiness. This fact seems to be one that appears to be debatable in the minds of some folks. I do not see it that way.
Since this is my first winter season with RA fully working in my body, my adjustments have been daily. I thought that there was no greater pain with the usual flares that have occurred. I have learned that cold weather is like a knife being twirled inside of my joints. Going out requires me to layer up to protect my elbows, hips, knees, ankles and my feet.
I realized that I needed to find a community where the common bond was RA. I have been quietly searching for an online space where people like me could share information and provide support. This was a difficult admission for me to make personally.
There are a lot of online communities for different types of arthritic conditions. I have looked at several and turned them down because they are sponsored by pharmaceutical producers. I don’t need any additional medical therapies beyond what is currently prescribed. A lot of the interaction is based on how individuals feel about those therapies.
Last night, I finally found a space where I can feel comfortable. It is a social media site for people with RA. I stumbled upon it looking for exercise applications for people with arthritis.
My RA is a community that provides support and allows the type of conversation that people who are dealing with chronic pain need to have as a form of relief.
Even though I have several social media accounts, I am usually a low information sharer regarding my personal life. My RA requires that enough information is given about what is happening to each individual who is a member of the site. You have to share details about the type of therapies being used, the areas of pain that you experience, and other RA-related details. There would have been a time when this type of community sharing would have sent me the opposite direction.
For a moment, my automatic protective shield formed. I don’t know anyone on this site and the idea of sharing this type of personal level was unthinkable to me. I almost backed up because this felt uncomfortable. I could not see me doing this kind of open sharing.
Then I remembered that this was a moment when I needed to fulfill my personal promise of being bold and brave in a different way. I filled out the required information and opened an account.
I found that telling my story actually helped me to feel better mentally. One of the really nice aspects of this site is the connectivity that people have. We are each other’s team members. A support system with people who understand what the RA experience is about is exactly the prescription that I needed to have filled.
It is understood when you sign up for a membership that the rules of being respectful and non-judgmental are strictly enforced. There are rules that prohibit ads for drug therapies or outside treatments. I like that aspect a lot because I have learned that there are various therapies available on the market and a lot of work goes into trying to attract new customers. I have to trust my Rheumatologist and my Gastroenterologist right now because of my actual health conditions. I don’t need some company trying to upend their decisions. The absence of ads and constant notifications is actually soothing. I was able to read stories posted by other members without the constant interruption of notifications popping up on the screen.
One of the other features that I like about this site is the individual wellness rating for the day. Good, Bad, So-So. This is really how it is for people with RA. You just click a box and share what’s going on with you physically and mentally for the day. Someone knows what that feels like and they are willing to co-sign with understanding.
I originally believed that learning to deal with RA was going to be more of it’s-on-me type of situation. One day I realized that this is just another variation of being an S.B.W.(Strong Black Woman).
It’s hard as hell to be stoic about this type of pain. It's difficult to just hold in how it feels all the time. I found that it is stressful to try and bear this type of mental weight alone. Finding a community where sharing the load has helped me a lot.
Now that I am a team member of My RA, there is a community where I can fit in and that feels good!