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Cushing’s and Coping with an Unknown Outcome: Ambiguous Loss

Author and therapist, Pauline Boss, states, “With ambiguous loss, there is no closure; the challenge is to learn how to live with the ambiguity”. Often we refer to this type of loss when referring to soldiers missing in action or the loss of a loved one to Alzheimer’s. Because there is no closure, no clear resolution, the grieving process may become “frozen.” I liken this to coping with Cushing’s, as we wonder about our healing process and our losses. The questions may arise, “Will I ever feel ‘normal’ again?” “Will I regain strength or lose weight or regain my memory?” Being in a situation of ambiguous loss or frozen grief generally causes us to worry about things that are not under our control, often consuming our thoughts and wasting our energy. So, today I want to touch on five points, adapted from the book, Loss, Trauma and Resilience by Pauline Boss that may be useful to us, as we continue our healing journey.

According to Pauline Boss, we can ease the effects of our ambiguous loss by doing the following:

1. Finding meaning: Victor Frankl spoke of this in his book, Man’s Search for Meaning when he discussed at length how he found meaning during his time as a concentration camp inmate, not knowing what might happen next. His writing was powerful as he spoke of the unavoidability of suffering in life, yet the necessity of finding meaning, regardless. What gives us meaning as we continue our healing process? God?, the belief, “I am not the same but I am still here.”?, raising children?, our relationships with friends and family? The answers will be different for everyone. There is no wrong answer.

Once we identify what gives us meaning, it is helpful to focus our thoughts and energy in that area.

2. Tempering mastery: Mastery may be defined as the ability to grasp or have a sense of command of a subject. To temper mastery, we learn to balance our need for perfectionism with patience. After my transsphenoidal surgery, I became very tired. The Dr. informed me that I would look “deceptively normal.” This was true! Yet, I was unable to focus as easily, concentrate on any task for very long, or complete the household chores as I had before. Tempering mastery for me included having patience with myself, re-defining my command of many things and recognizing progress, as slow as it was. For example, post-op, I initially was only able to read a page at a time in a book. Historically, I had read books in one sitting! Two years later, I can now make my way through a book in a few days.

The saying, “I can control what I can control and need to focus less on what I can’t control” may help us.

3. Reconstructing Identity: According to Pauline Boss, identity is “knowing who one is and what roles one will play in relation to others in the family and community.” Our identity often changes with Cushing’s, as we struggle with energy, memory, and overall recovery. Often, we lose friendships, jobs and sometimes partnerships. Crucial to reconstructing identity, is surrounding ourselves with the people with whom we find unconditional support and love. Also crucial, are people with flexibility. Our roles often shift as we cope with Cushing’s. Perhaps we can begin a new hobby and share it with another.

Sharing experiences with another assists in framing our new identity.

4. Normalizing Ambivalence: Have we ever sabotaged our wellness, not taken our medication, eaten everything in sight, despite knowing that we will “pay” tomorrow? It is normal to feel negative feelings, not only about our disease, but also our recovery.

What can we do to be gentle with ourselves, forgive ourselves and get back on the road to healing?

5. Discovering Hope: I love Pauline Boss’s recommendation that we “imagine options”! I believe firmly in the power of the mind and imagination to further our healing in ways that are unexpected, and that may defy medical expectations regarding our recovery. Here also is where our spirituality is firmly planted along with a hefty dose of patience in our own recovery. We can listen to stories of other’s healing to further inspire us.

Affirmations such as, “I am healing every day, gaining strength and focus. My body is a miracle.” may be useful.

So, in sum, as I contemplate my own healing process, I calm myself with the thought that I am doing the best I can today to recover. I am further along in my healing this year than last and I know more about my body and mind than I ever have before. I forgive myself for the ambivalence I sometimes feel (toward sugar and pizza) and I practice patience with myself as needed. I am also hopeful that my body continues to heal. I surround myself with loved ones who are patient and understanding, and also with the Cushing’s community, with whom I have a unique bond. Here is to our continued healing and support of one another!

Author: Dawn Herring, LMFT and Cushing’s survivor, Summer, 2016

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