Someone you love and care about deeply has died. Initially most people, particularly if it is an unexpected, sudden death, are in shock, immobilized, unable to perform their normal daily activities. Individuals depend on the help of others to provide, guide and perform what they cannot in the early stages of grief and loss.
Many of you reading this will remember the early days, but it is not uncommon for those memories to be quite blurry. After the initial planning, death rituals, memorial or funeral many of the helpers, friends and family return to their lives. You may feel abandoned or left alone. Or you may be with your immediate family, with each person attempting to accept the reality of your loss.
In her book, How to Go on Living When Someone You Love Dies, Theresa Rando PhD writes about “family reorganization.” When a family member dies, the sum of the parts has changed, and it takes time to balance and reset. The surviving family members often will have little to give each other as this rebalancing process takes place. These factors can contribute to feelings of social isolation after the loss of a loved one.
Isolation may be self-imposed as a way of surviving loss. You may try to avoid hurtful comments, people urging you to “be okay,” or those pushing you to socialize prematurely. I have heard many bereaved ask, “How can their lives be going on, when mine has been shattered?” People describe hearing others laughing as painful. Most people recovering from “loss trauma” are in physical, emotional, and mental pain. Grief requires a great deal of energy. You are in a period of reconciliation, often feeling paralyzed, lethargic, lacking the will to eat, drink water or have any drive to do much of anything.
Some people simply isolate because they believe they are strong, independent and self-sufficient. They may even feel it is a sign of weakness to need others. Some find themselves socially isolated because the person who died was their connection to social support.
Grievers may find themselves increasingly socially isolated when others can’t or refuse to acknowledge the death. Disenfranchised grief is a term describing grief that is not acknowledged by society. Examples of this type of grief include cases of death where foul play may be suspected, death is the result of suicide, or homicide.
Relationships can also impact society’s acknowledgement of death. Examples include the death of an ex-spouse; a partner who may have been married to someone else; or lesbian, gay, bi-sexual, or transgendered partners. The failure of society to recognize these losses can lead to isolation and feelings of loneliness.
Loneliness is a complex and usually unpleasant emotional response to isolation or lack of companionship. Loneliness can have negative consequences on both physical and mental health. Research has shown that loneliness can impact stress, heart health and immunity. But these are not the only areas in which loneliness takes its toll.
"Lonely adults consume more alcohol and get less exercise than those who are not lonely," explained John Cacioppo, co-author of the book, Loneliness: Human Nature and the Need for Social Connection, in an interview with U.S. News and World Report. He goes on to say, "Their diet is higher in fat, their sleep is less efficient, and they report more daytime fatigue. Loneliness also disrupts the regulation of cellular processes deep within the body, predisposing us to premature aging."
Solitude has a more positive connotation than isolation. Generally, it describes a state of seclusion to work, think, and rest without disturbance, as well as a desire for privacy. Some will seek solitude as they find well-meaning expressions of sympathy exacerbate their pain. Solitude can give people in grief time for contemplation, reflection, and spiritual growth.
Return to Life and Connection
Grief is a very unique process. How you as an individual traverse that journey is up to you. The progressive return to your usual work, family, and friends is very important. We know that grief is transformative; changing us from what existed prior to our loss. Some of the parts of our life will most certainly change, while some of the old self will return in time.
You as the grieving individual can take charge of what you need to move into a routine as you face the challenge of how to live without your loved one. Building a support network is an important step in the grieving process.
- Seek support from those who are able to give it.
- Accept help from those who have offered.
- Join a support group with others who have had a similar loss; hospice, compassionate friends, local hospitals, and funeral homes are great resources.
- Use writing, art, music, and journaling to let your feelings out.
- Participate in physical activity if this is more your style. The National Walk for Epilepsy in Washington, D.C., is a great opportunity. Join Team SUDEP or email firstname.lastname@example.org to have a flag decorated in honor of your loved one if you are unable to attend.
- Take a challenge or find a new activity that makes you feel better.
- Be forgiving and patient with yourself and others.
- Seek guidance from clergy and sources that can offer you wisdom.
- Find a balance between joy and sorrow, and allow yourself both.
- Find a grief counselor if you need more individualized care, have a history of mental illness, or are feeling intense emotions that are not changing after 6 to 12 months.
- If you are more comfortable in your own home, socialize with others online who will listen. The Epilepsy Foundation SUDEP Institute will be launching a new online community for families bereaved by epilepsy. This will be a great place to connect with others who have experienced a similar loss and with experts in the area of grief and epilepsy. Here are just a few other sites you may want to consider: wouldhavesaid.com, gratefulness.org, webhealing.com, compassionatefriends.org
- Contact your local affiliate or the national Epilepsy Foundation and get involved.
Take the opportunity to heal with the help of others. Over time the intensity of loss softens and finds a place where it lives inside of you with the precious memories of your loved one. Time does not make the pain go away; the “work” of grief is a process.
SUDEP Institute Bereavement Support Facilitator Linda Coughlin Brooks RN, BSN, CT, contributes regular articles as part of our bereavement support services. Contact her at email@example.com. Learn more about our support for the bereaved.