The most difficult parts of being diagnosed with a "progressive and incurable" neurological disease, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), at a young age are the multiple losses and subsequent grieving periods that occur and are associated with a chronic and progressive disease. Thankfully, I am currently reversing the disease process and healing, but there was a time when the “progressive” label was my direct experience, and I was forced to grieve the many losses that accompanied it. Grief is a natural reaction to a devastating diagnosis, but what happens when the losses are multiple? And what if they don’t all happen at once?
Many of us are familiar with Dr. Elisabeth Kubler-Ross’ five stages of grief (denial, anger, depression, bargaining, and acceptance) proposed in her 1969 book, On Death and Dying, and if you aren’t, I highly recommend her writings. These stages can be applied to a full range of situations outside of loss of a loved one, including loss of a job, loss of a bodily function, and loss of a perceived or planned future. Each stage can be experienced for differing lengths of time, skipped, or even revisited again after being worked through, and each individual will move toward acceptance at his/her own rate.
I’ll admit, I’ve spent a lot of time in the anger and depression stages of grieving but am now happily and comfortably situated in the acceptance stage after much time, counseling, and independent contemplation. Losses constantly occur in our lives as changes are inevitable to human existence, but sometimes, we are faced with a loss that we do not have the ability to adjust to and cope with quickly or independently. With a chronic, degenerative disease, losses often come in stages and are spread out over long periods of time. One may experience loss of a bodily function and grieve that loss only to start the grieving process over again when another loss occurs.
We must learn to grieve these losses so that we may have the ability to recognize and show gratitude for the lessons we have learned and what we have gained through the experience. Below are five tips for successful grieving.
1. Give Yourself Permission to Feel – Repression of feelings is not conducive to healing, and if you don’t address your emotions, you create the possibility for engaging in dysfunctional behaviors, such as self-medication. Crying is cathartic and a powerful way to truly feel emotions, yet when we see someone cry in our society, our response is usually, “Don’t cry,” because we are uncomfortable with raw emotion. When I worked in a hospice and my clients cried due to loss of a loved one or anticipatory loss of a loved one, my response would be, “It’s OK to cry,” as I sat with them in silence as a supportive presence to their grief.
2. Surrender to a New Reality – Acceptance is not passive, but rather an active surrendering to what is, to a new reality. It was important for me to realize that surrendering to a new reality did not mean I would never again be able to regain what I lost. What it did mean was that I was making my life easier by accepting the present moment, however uncomfortable or unwanted, and allowing myself to enjoy the blessings I did have in my life instead of being consumed by my losses.
3. Think About What You Gain – Disease is not just about loss, but it is also about lessons learned, growth made, and things gained. This disease has been my greatest burden but also my greatest gift, and it was my responsibility to have that divine realization.
4. Seek Out Support – Healing happens through healthy relationships. Whether it is through individual mental health or spiritual counseling, group support, or support from loved ones, honest, open expression of feelings with people you trust and with individuals who have shared experiences creates the environment for true acceptance of loss to occur.
5. Say “Good-Bye” – My biggest and most difficult loss to grieve was the loss of my athletics, particularly running. I wrote a good-bye letter to running to express my sorrows and to give myself permission to let that part of myself go. The letter writing experience was a turning point in my grieving process because I had kept many of my feelings about the loss inside up until that point. I had felt shame because, according to me, the loss wasn’t big enough to warrant such long standing depression. Now, I know loss, just like everything else in life, is relative to the individual experiencing it, and that has allowed me to move forward.