When asked what I do, I’m about to shock yet another person. My answer these days is, “I specialize in the world of death and drugs.” After reviving the person who asked, I explain the losses that brought me to The Compassionate Friends. Quickly I add how finding TCF allowed me to evolve into advocacy to educate and save the lives of others dealing with the disease of addiction. Should I change my response? Not going to happen – I’ve become an advocate for bereavement and substance use disorder issues. A bit of gentle shock opens doors slammed shut by mindlessness.
Recently I was asked two very different questions which got me thinking about the topic of secondary gain. I first learned about this concept when I was suffering from a collapsed immune system. My friend, Bruce and I were part of a support group. We kept looking for healing options. Others, instead, were adding to the list of their diagnoses. Bruce was formerly a successful banker now struggling to pay his mortgage. I had my own financial issues fighting insurance denials. After some time, each of us found different modalities that were providing us hope. We were then tossed from the group as our health improved.
Another friend, Tim, introduced me to the concept of secondary gain. He suffers a degenerative disorder and is my hero for all things related to disability. When first experiencing the onset of symptoms, Tim went to a martial arts studio asking to be taught how to fall. When he became scooter bound, he got a local engineering class to modify his lawn mower so he could take care of the grass. This meant he could also walk his huge dog. Always looking for ways to cope, Tim often had wisdom to offer. His sister, with the same disease and much younger, chose to collapse into the disease.
Tim was still working and having a full life. Darla sat isolated at home. Dependent on others for food and ultimately self-care, she chose the path of secondary gain. Always angry at being slighted by life, she demanded others care for her. She assumed support would come in financial aid, prepared food and so forth. That didn’t happen. While we suffer a real illness (including bereavement) along the path of the process, there can be traps, places where we get stuck.
Recently several colleagues asked me why some people seem very attached to their grief. Having been part of TCF for many years I resisted my initial urge to dismiss the question as ignorance. As I listened instead to their comments, I was reminded of the notion of “secondary gain”: “An indirect benefit, usually obtained through an illness or debility. Such gains may include monetary and disability benefits, personal attention, or escape from unpleasant situations and responsibilities”. Mosby’s Medical Dictionary, 9th edition. © 2009, Elsevier.
Ofen Maggie called upset that she was yet again struggling with her sense of guilt over the death of her son to overdose. “Every morning I lay in bed for two hours obsessing what I could have done differently, better. I know better but I just can’t stop.” We have had this conversation many times. Empathizing, listening and gently probing, I asked if this was a habit, a need, a process? What purpose was this obsessing serving for her?
Grief is a process and it takes the time it takes. How often do we find ourselves stuck and looking for a path forward? Is our pathfinding serving any healing progress or holding us captive to suffering? One aspect of secondary gain is that we can’t see it. We are in it.
When I suggested Maggie change her morning routine for a few weeks, she agreed to give it a go. She’s smart; she is aware. Maybe having someone see her in a different light can help her get unstuck. Together we’ll learn how this change might serve her freeing up the energy to do the things currently on hold.
When we lose our loved ones in any way the process is hard. Add a stigmatized loss and there are many other aspects to work through. With substance-related causes – suicide, overdose, organ failure – we have the guilt of what may have occurred before death and then the eternal questions of “if only”. We question everything and this layer of inner turmoil can lead to complications including secondary gain.
To my colleagues, I say, “Please start by learning about the grief we experience as parents, grandparents and/or siblings. Look at the many layers we deal with when stigma and ignorance surround the cause of death. Understand perhaps we are overdue for self-care, to matter, or to find a place for our unexpressed need to parent. These might be seeds for the stuck places after a life-altering loss resulting in something like secondary gain.
For Maggie as well as myself, when stuck – seek input from someone you trust. I would never cut my own hair. Not being familiar with the back of my head, it would be a disaster.
For me, I choose input from someone who won’t sugarcoat feedback; someone who I know loves me as I yet want the best for my choices. Over time, I’ve cultivated a few special people who tell me what I need to hear, not what I want to hear. These friends allow me to feel safe in the world.
For me, it isn’t a counselor, a lawyer or other professional. In the years of debilitating illness, I was forced to learn to ask for help. It was painful. I was the fixer; the go-to person. Then I became the needy person and I hated it. Being weak was not my thing. What I received was a blessing that keeps giving.
There is an irony to all the lessons of secondary gain for me. Professionally I was very successful, partly because I sought learning at every opportunity. I learned that typically many love to teach, to share information; those who protected or refused to share their knowledge had nothing I really needed. But I didn’t trust letting anyone into my personal insecurities. Life in my childhood home was never safe; school and later the workplace was much safer. Debilitating illness forced me to let the inner walls down.
When Jim died, I knew I couldn’t do grief alone. Also, I would never allow anyone to put the cause of my son’s death between the love and respect I have for him always and forever. Today my work in advocacy is amazing, built on compassion, respect and the wisdom shared by many. I continue to work through my own stuck places.
My work within TCF is another blessing as I continue to learn from everyone I meet in our chapters, on Facebook, at conferences or in line at the grocery store.
Life is complex; so is bereavement. Are you in a stuck place? You are not alone!
No Shame or Blame ~ Just Love®
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