By Mary Ray, co-founder and COO of myRAteam.com
Mary Ray is the co-founder and COO of myRAteam, the social network for people living with rheumatoid arthritis/rheumatoid disease (RA/RD). Members use myRAteam.com to share their personal experiences, stories and daily ups and downs with one another. Here, Mary shares the most common experience she’s learned from the 35,000 members on myRAteam.
“I had no idea I could get arthritis in my 30s,” thought Lisa*, a 38-year-old single mom living in Buffalo, New York. This is a common sentiment echoed by millions of others living with RA/RD. Lisa had a busy life with two children and a job as an accountant when she began experiencing pain in her joints.
“I needed to go straight home and rest after work. I couldn’t pick up my kids,” she says. “I became overwhelmed with anxiety when I realized that these episodes were becoming more frequent. I was in freefall as I lost control.”
Receiving an RA/RD diagnosis can be both a relief and upsetting:
It can be a relief to have a name for the misery that’s become a regularity. A doctor’s validation that it’s not all in our heads helps, too.
On the other hand, an RA/RD diagnosis can be upsetting because it labels us with a problem for which there is no clear cure. Diagnosis is like suddenly falling off a cliff. Abruptly, life before a diagnosis vanishes. It’s the beginning of a new life path managing pain.
Stages of Grief
If diagnosis is like falling off a tall cliff, then grappling with this new reality is like going through stages of grief. RA/RD brings agonizing physical pain and sweeps us down a rough path of emotional pain.
The Kübler-Ross Model—otherwise known as the five stages of grief—was introduced by Swiss psychiatrist Elisabeth Kübler-Ross in 1969. The stages represent difficult feelings experienced during hardships and traumatic events, such as after the death of a loved one, an addiction, or a breakup. Grief is experienced by people who find themselves living with chronic conditions, too.
The five stages of grief are denial, anger, bargaining, depression, and acceptance. The stages are rarely linear like a staircase, and many people revisit some or all of the stages over and over during flares.
“After my diagnosis, I cycled through feelings of numbness, anger, denial, and hopelessness. I started to focus on all the things I couldn’t do,” says Lisa.
Anger sets in when we acknowledge what we’ve lost—what many of us call the “old normal.” Suddenly, there are new realities because of RA/RD: missing after-work cocktails or family dinners, worrying about pill schedules, running to endless doctor’s appointments, losing friends because they don’t understand why we have to cancel plans suddenly. Some days begin with bargaining and trying to live perfectly in hopes that it will go away. The frustration and disappointment in the chronic nature of RA/RD can lead to depression and sadness.
While living with all the unknowns of RA/RD, we also climb a seemingly unending emotional staircase to nowhere. Lifting legs that don’t work like they used to, each stage of grief is as tiring as the last.
Relief (New Normal)
An official diagnosis can be the catalyst we need to move us past denial. Each ensuing stage of grief forces us to self-identify with our new reality. Relief slowly begins to creep in when this new normal is shared with others. Social support, like on myRAteam.com, slowly turns the unending staircase of grief into a flatter, more predictable path called the “new normal.”
“The RA community is such a comfort to me,” says Lisa. “I feel less alone. We share tips, offer virtual hugs during hard times, and remind each other to stay hopeful.”
Forging social support from others with RA/RD can bring perspective and validation. Any predictability is a relief. The ways of the “new normal” are taught, learned, and celebrated in RA/RD communities. Small victories like identifying and avoiding flare triggers, learning to manage medication side effects, or reducing stress are welcomed.
“With RA, achieving ordinary things like laundry or regular sleep are actually extraordinary,” Lisa says. “I love to share these victories with others.”
Acceptance, the final stage of grief, allows us to accept our diagnosis. We begin to have the space to support others when they are having a bad day. Walking through life with RA isn’t easy or what any of us asked for, but it makes all the difference to walk this new path with others who understand.
Living with a chronic condition like RA/RD can take its toll. There is a social impact, a psychological impact, and even financial impact. Beyond diagnosis, recognizing that thousands of others may share the same path to a new normal can do much in alleviating the burden of the condition. Have you found your new normal?
*Names have been changed to protect the subjects’ privacy
About the author:
Mary Ray is the co-founder and COO of myRAteam, the social network for people living with rheumatoid arthritis/rheumatoid disease (RA/RD). Members use myRAteam.com to share their personal experiences, stories, and daily ups and downs with one another. Here, Mary shares the most common experience she’s learned from thousands of members of myRAteam.