Counseling & Soul Care for Living & Working with Chronic Illness & Disability

When we acquire a chronic illness &/or disability, we can face many losses. Each person’s losses are unique but often include the loss of control of our bodies, a loss of friends, & a loss of valued activities. We may have to give up our job and therefore lose income, companionship, status, and identity. And often we have to abandon dreams, thus losing the future we envisioned for ourselves. In summary, we experience the loss of the person we used to be and the person we hoped to become. The pervasiveness of loss presents us with our biggest challenge: keeping hope alive and brining new meaning to life in the face of loss.

Defining Recovery & Recovery Centered Care

As such, “recovery” presents a pathway not towards a “cure,” but towards recovering and reclaiming a meaningful life for ourselves in the midst of our illnesses and disabilities. As such, “recovery centered care” cultivates an environment which allows for each person’s recovery process to be nurtured with intention and great care.

Recovery is characterized by a renewed sense of hope

• A sense of hope can be generated by exposure to another person’s story of their experience of and recovery from illness & disability. Counseling and attending peer support groups can assist us in this process.

• These experiences inform us that it is possible to regain control over one’s life and regain independence. Referrals to resources, support groups, reading material and audiovisual resources can be made available to us at all stages of treatment and recovery.

• Hope can also be generated by the therapeutic engagement between us and clinician/counselor where you are assisted to explore your strengths, potential and past successes.

Recovery is working through loss & achieving understanding and acceptance

• We do not have to accept that we have an illness and/or disability to commence recovery; clinicians help you make some sense of your life experiences, learn from them and accept them.

• It is normal for us to try “pass as normal” and deny our illness and/or disability. This can be a very helpful defense for the overwhelming realities one is facing and most of us enter into this phase when we experience deep losses. Clinicians will help you move through loss and develop a way to think about and understand your life experiences and challenges.

Recovery is moving from withdrawal to engagement and active participation in life

• Many recovering people describe a period of extreme social withdrawal and frozen inactivity before, during or following a period of illness &/or disability.

• In recovery we break through this frozen state of suspended animation and begin to participate actively in life once again.

• We may require significant support and encouragement to approach old friends, try familiar activities, or attempt something new. Clinicians may act as your cheer squad as they support you to challenge their fears, reminding you that you may need to be “willing to try and fail and try again”.

• Recovery is active engagement rather than passive adjustment.

• Recovery means learning to make decisions and choices that are real, taking risks in order to experience growth, and assuming personal responsibility for your recovery process.

• You will be helped to overcome and challenge notions of disability and personal limits; You will be assisted in finding your passion and work with dreams and goals, understanding that failure and setbacks are a normal part of living and learning.

Recovery means no longer viewing ourselves primarily as a person with an illness/disability and reclaiming a sense of self

• You are not a diagnosis and should not feel completely defined by your disorder. In recovery, illness &/or disability, and its accompanying challenges become a fact of life but not the core of your life. Pat Deegan, writes “in accepting what we cannot do or be, we begin to discover who we can be and what we can do.”

• Recovery is moving from alienation to a sense of meaning and purpose.

• You may experience a profound sense of alienation prior to recovery. Suffering brings dislocation. Pat Deegan described her own dislocation and alienation like “a ship floating in a sea with no course or bearings.” Her future seemed “a barren place, where no dream could be planted and grow into reality.”

• One person in recovery from mental illness disability wrote “Ultimately we must conquer stigma from within, as a first step it is imperative to look within ourselves for our strengths. These strengths are the tools for rebuilding our self-image and thus our self-esteem.”

• Stigma can be challenged through the therapeutic alliance between your clinician and you, in the words they use when discussing your recovery pathway. Education for family and friends may also reduce stigma and people may be referred to peer support groups to help address self-esteem issue, reduce emotional isolation and engage in mutual self-help.

Is complex and nonlinear journey

• We do not make the recovery journey in one grand leap; we learn to feel good about taking very small concrete steps. We do this by achieving “small triumphs” through “simple acts of courage” like riding in a car or talking to a friend for a few minutes. Recovery is an evolving process, one that sometimes spirals back upon itself, and may result in a frustrating return to an active disorder after periods of positive functioning. Recovery is individual and unique.

• Clinicians can witness and support all phases of your recovery, assisting you to make sense of the journey, encouraging growth, celebrating success and being there during relapses or disappointments.

Is not accomplished alone – the journey involves support and partnership

• People describe recovery as a process that invariably involves many other people. While no one can change another person, or force him or her into recovery, other people can strongly influence the process. Peers can spark and support recovery through formal self-help, informal encounters, mutual assistance and exposure to their stories of recovery.

• Clinicians can facilitate engagement in a self-directed recovery process where the you can realize that another human being cannot fix or set you free, yet others can assist you to find their own way. This enables you to take responsibility for their own recovery.

What RECOVERY does not mean

• Recovery does not necessarily mean you are cured or that you will no longer experience symptoms or pain

• Recovery does not mean that you will no longer have struggles

• Recovery does not necessarily mean that you will no longer utilize health and other supportive services

• Recovery does not mean you won’t use medication or need assistive aids

• Recovery does not necessarily mean that you will be completely independent in meeting all of you illness and/or disability needs

Material on this page is based on the following books: The CFIDS/Fibromyalgia Toolkit: A Practical Self-Help Guide by Dr. Bruce Campbell, PhD (2000) & The Strengths Model: A Recovery-Oriented Approach to Mental Health Services by Charles Rapp and Richard Goscha (2011).