By Mary Ray, co-founder and COO of MyMigraineTeam.com
Grief is a necessary step for life after diagnosis.
“I thought I was the only one,” thought Karen*, a 45-year-old single mom living in Denver, Colo. This is a common sentiment echoed by millions of others living with migraine. Karen’s life was already busy with three kids and a job as a medical assistant when she began experiencing painful migraine attacks.
“I would need 14 or 15 hours in a dark room while my head pounded,” she says. “I wasn’t the same for several days afterward. I became overwhelmed with anxiety when I realized that these episodes were becoming more frequent and were more than just headaches. I was in free fall as I lost control,” says Karen.
Receiving a chronic migraine diagnosis can be both a relief and an upsetting reality. 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, a migraine 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, the life we led before diagnosis vanishes. It’s the beginning of a new life path managing migraine.
Stages of Grief
If diagnosis is like falling off a tall cliff, than grappling with this new reality is like going through stages of grief. Migraine attacks bring agonizing physical pain and sweep 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; 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 Karen.
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 migraine: 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 at the last minute.
Some days begin with bargaining and trying to manage migraine perfectly in hopes that it goes away.
The disappointment and frustration with the chronic nature of migraine can lead to depression and sadness.
While living with all the unknowns of migraine, we also climb a seemingly unending emotional staircase to nowhere. Lifting legs that don’t work like they used to, we find each stage of grief as tiring as the last.
Relief (New Normal)
But 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 slowly turns the unending staircase of grief into a flatter, more predictable path called the “new normal.”
“The migraine community is such a comfort to me,” says Karen. “I feel less alone. We share tips, offer virtual hugs during hard times, and remind each other to stay hopeful.”
Receiving social support from others with migraine can bring perspective and validation. Any amount of predictability is a relief. The ways of the “new normal” are taught, learned, and celebrated in migraine communities.
Small victories like identifying and avoiding migraine triggers, learning to manage medication side effects, or reducing stress are welcomed.
“Now that I self-identify as someone living with migraine, achieving ordinary things like laundry or regular sleep are actually extraordinary,” Karen says. “I love to share these victories with other migraineurs.”
“Acceptance, the final stage of grief, allows me to accept my diagnosis,” says Karen. “I begin to have the space to support others when they are having a bad day. Walking through life with migraine isn’t easy or what I asked for, but it makes all the difference to walk this new path with others who understand.”
Living with a chronic condition like migraine 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 to alleviate the burden of the condition. Have you found your new normal?
*Name has been changed to protect the subject’s privacy
About the author:
Mary Ray is the co-founder and COO of MyMigraineTeam.com, the social network for people living with migraine. Members use MyMigraineTeam.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 MyMigraineTeam.