Millions of individuals are challenged with debilitating and perhaps long term illness for which there may not be a cure. Many of these people may never revisit their ‘previously well’ state of being; physically, psychologically and socially. The life of someone with a chronic medical condition is impacted in ways that a healthy person cannot begin to comprehend. There is tremendous impact to the social, recreational and occupational functioning of someone with illness. Relationships are often compromised and strained as the effects on the family can be as great, but different, than that of the person who is ill. The emotional toll on someone with the challenges of an ongoing illness can be overwhelming. Mood-related symptoms, anxiety, depression, anger, irritability, helplessness and hopelessness are emotions that all those with illness have experienced. In addition, the person with the illness is in a constant state of grieving aspects of themselves that they may not reclaim. Coping with the ongoing effects of illness requires a constant reorganizing and redefinition of self based on the changed reality imposed by the illness.
Any chronic condition has the potential to take on a ‘life form of its' own’ and individuals may feel a sense of powerlessness over their life due to the ravages of the illness. It is imperative that the person with illness recognizes that there are ways that he/she can regain a sense of mastery over aspects of their life, in spite of the medical condition that they are facing every day. With guidance, you can learn ways to attend to the areas of life that still remain under your conscious control. Learning ways to take charge of that which you still have power over creates a sense of well-being that transcends the grasp that the illness has had on you, your attitudes and your approach to life.
Coping With a Chronic Illness
There are a broad range of chronic medical conditions. Some may be potentially life-threatening, such as cancer, heart disease and AIDS. Some chronic conditions are associated with the aging process and though understood may still have a steady progression. Conditions, like diabetes or high blood pressure are somewhat predictable and manageable. Other health conditions that are less understood, intermittent in their symptomatology and therefore unpredictable are frustrating to the individual and to the medical professional. It is with this latter group of illnesses, such as Chronic Fatigue Syndrome and Fibromyalgia that the bulk of this section on illness is aimed at addressing. With any chronic illness, the individual is going to have significant psychological reactions and be challenged to cope in ways that he/she may not have the skills for. Psychologists can facilitate the process of learning to cope with the various stages that a person experiences throughout their illness. It is expected that there will be significant challenges and setbacks along the way; therefore, adaptation to a disease process is an ongoing journey.
Psychological Impact of Chronic Illness
The way in which an individual is affected psychologically is dependent on many factors. Some of these include the nature of the illness itself, its severity and the treatment involved. Other factors impacting an individuals’ ability to cope have to do with their personality, circumstances of their life prior to the illness and the level of social support that they have access to. Regardless of these factors, all individuals must go through various stages as they attempt to adjust and cope to the realities of their chronic condition.
Initially there may be shock, denial and disbelief that something is even wrong. The persistence of symptoms however makes it difficult to ignore. Resistance to the real changes occurring in the body cause a person to push themselves beyond what their body can do, creating more exhaustion and ‘crashing’ while they attempt to recover. Feelings of anxiety and fear occur in response to the uncertainty of the future; and the possible loss of goals unrealized contributes to sadness, depression and grief. Further losses come in the form of having to relinquish roles and responsibilities which lead to feelings of inadequacy and guilt. One becomes sensitive as well to the potential burden that loved ones now may feel, leading to more shame and possibly resentment and anger.
Abandoning a sense of prior independence takes a toll on one’s self-esteem, self-worth and self-image; a real identity crisis ensues. As a result of increased feelings of dependency there are emotions around the loss of status, power and control that overwhelm a once healthy, capable and functioning individual. There can be stigma associated with disability and as a result of others’ reactions, including friends and family; there can be an increase in withdrawal and isolation. The individual becomes affected by feelings of abandonment, rejection and loneliness. Compounding all of these possible reactions is the blame and self-punishment imposed on the self for having their condition in the first place. In addition to trying to manage the actual illness on a daily basis, the profound nature of these emotional consequences not surprisingly can lead to feelings of helplessness and hopelessness. Fortunately there are ways that a person can learn to navigate through all the complex reactions and adjustments that they are facing as they go through the various stages of the illness.
Support and the Impact on Family & Friends
During the various stages and cycles of the illness, family and friends are profoundly affected and may end up needing their own support. They too are trying to adjust to the multitude of changes that have occurred as their loved one became ill. For some there are significant changes in roles and responsibilities which can overwhelm the well person and contribute to feelings of powerless to the one chronically ill. For many, lifestyle and social functioning is dramatically altered; sometimes creating sadness and perhaps anger over the loss of the person before they became ill. Intimacy issues and learning how to maintain friendships and companionship can be challenging.
There is often fear and anxiety over the chronicity of the changes and the drain perhaps to resources; emotional, physical and financial. There may be resentment and the caregiver may feel alone and isolated as most of the attention goes to meeting the needs of the chronically ill person. The ability of family and friends to support is affected by their ability to deal with ongoing stress, their flexibility in the face of uncertainty and being able to effectively communicate. It is as important for primary caregivers to seek the support and guidance they need to assist them in their own journey with the chronically ill.
Coping Strategies for Transcending Illness
At some point in the cycle of your illness you come to recognize the ‘chronicity’ of your symptoms and the realization that you must learn to cope long term with the effects and changes to your self and life overall. A significant objective in the management of your condition is to regain a sense of personal control over your self and your life. The following areas can assist in the achievement of this goal.
Educate yourself: Information is power and educating yourself during this time is an important way to take charge of your situation. This is a time to take full responsibility for the management of your health and it means knowing your choices and making decisions for your care.
Environmental changes: Learning ways to organize your home and work setting to make the tasks of daily living easier is a practical way to feel in charge.
Access resources: Review financial issues, home care, insurance and disability claims, support groups, educational seminars, books, audiotapes.
Symptom management: Follow through on recommended treatment, investigate additional or alternate forms of treatment, be informed about medication, and decrease overuse of narcotics and self-medicating (alcohol or substance abuse), proper nutrition, recommended exercise program.
Body Awareness: Become familiar with activities that ‘trigger’ symptoms, learn the art of ‘pacing’; that is, discovering what your body tells you about where its limits are. Be willing to gently challenge your perceived limitations because there is also a tendency to ‘protect’ in an attempt to avoid flare-ups. You will need to regularly ‘test’ your own limits to assess where you are at.
Communication: It is important for self-management to have the skills that effectively communicate your needs to others. These people may be health care professionals, insurance representatives, friends, family and significant others.
Re-examine roles and responsibilities: The need to be able to ‘assert’ oneself is necessary in order to successfully redefine boundaries and limits on what you need and what you can do.
Value clarification: Evaluate what is important to you in this moment and feel good about honoring that. Recognize where and how you use your ‘energy’; emotionally and physically and decide if how you are doing so supports your well-being.
Goal-setting: Providing structure to your day through some basic planning and setting realistic goals contributes to a greater sense of purpose.
Rebuild confidence: As you find ways to empower yourself ensure that you acknowledge and validate all your successes; big and small. Reinforce the ways that you are still “able” versus emphasizing how you feel “dis-abled”.
Challenge Negative Thought Patterns and Reframing: “We are what we think”. This is perhaps one of the most important coping skills to learn in order to successfully manage and transcend the impact of chronic illness. Changing your perspective has profound consequences to your emotional well-being, which in turn affects your body in a positive way as well.
Attention-Control: This is a self-management technique that teaches you to deliberately shift attention from one thing to another. It includes distraction away from your symptoms by engaging in alternate and positive activities. Learning to distract yourself ‘internally’ is also a successful way to lead your mind away from pain and other symptoms
Identify Stressors and Relax: Stress worsens the experience of symptoms and leads to increased tension which negatively impacts the body. Learning deep breathing methods, full body relaxation, meditation, yoga, tai chi and other ways to relax the body are good for your overall state of well-being.
Discover new interests: Finding new activities through which you can experience pleasure is important to successful coping. Find ways to make yourself laugh; since humor is healing.
Identify and Resolve Emotions: Emotions from the past and present may wash over you daily. Getting professional assistance to work through these complex reactions is imperative to your state of wellness. Since the mind and body are interconnected, internalizing emotions has a negative impact on the body. We do not come into this life prepared to handle the challenges of an illness and yet we are extremely harsh on ourselves for the emotions that we naturally feel as a result. It is important to learn to let go of blame, self-punishment and have compassion for yourself and your body.
- Letting Go: The capacity to truly transcend your illness and empower you toward a feeling of inner peace requires the difficult task of ‘letting-go’. Recognizing where your attitudes and behaviors may be fostering dependence, resistance and self-sabotage is important to being able to let go. Acceptance that one must relinquish the old definition of self and life prior to becoming ill allows an opening to redefine and create new meaning and purpose beyond your illness.
Integrate Illness Experience into a new Meaningful Life
You have the opportunity to gain considerable insight into yourself and your life as you move through and cope with the emotional and physical aspects of your illness. Having a chronic condition means that you will have setbacks and move back and forth into times where you cope better than at other times. Part of the goal of coping well, is to regain compassion and respect for your self and your life as you redefine, reexamine and reconstruct aspect of the ‘new you’. You will still want to hold on to aspects of your ‘pre-illness’ self that you still value, however, will accept that certain attachments to the past in fact hold you back rather than move you forward. Clinging to old expectations of your self expends energy that is much better spent on living in the moment perhaps engaged in positive activities or simply spending time with people that you care about.
Transcending your illness means that you acknowledge that you are more than your body and its symptoms; life can have purpose and meaning beyond the limitations that your body has imposed. There are many aspects of life and living well that do not involve the body. Exploring these areas expands your learning and creativity which in turn helps to reinforce self-esteem and self-respect. Successful integration requires a level of acceptance of the realities of your illness. It does not require the adoption of a passive ‘sick role’; that is, relinquishing responsibility or giving in. Our beliefs reinforce our reality. Rather than seeing yourself free of illness, challenge yourself to see that there is more to your life than your dis-ease. Perhaps it is time to revisit and have gratitude for those things and people that you may have unintentionally taken for granted. Living in the moment allows one to pay attention to simple joys and find value out of everyday experiences.
The nature of a chronic illness is that it is a process. Arriving at a place of strength psychologically doesn’t mean that it is easy to stay there. You will constantly be challenged to revisit and incorporate the coping strategies that assist you in working through particular emotions and issues as they appear. You will find that you ‘recycle’ many of the emotions that you thought you had previously dealt with. The constant adjustments required and the grieving of losses along the way is part of a journey requiring ongoing attention. Having strategies to cope however, allow you to return to the place again where you are committed to living your best life, in spite of your limitations. Transcending your illness means that it doesn’t define you; rather, you decide how you want to create a life of meaning and purpose that brings you pride in spite of being ill. It is empowering to create goals and be self-directed when most aspects of an illness attempt to disempower you. Establishing a sense of purpose can inspire and move you forward with passion even while enduring the challenges of an illness. Just think of Christopher Reeve or people that you know who seem to paradoxically be living a more meaningful life since having a diagnosis of an illness.
It takes tremendous courage, persistence, perseverance, determination and strength to maintain a fighting spirit in the face of so many challenges. It is important to acknowledge yourself for these qualities. It is equally important to have compassion and forgiveness toward yourself when you hit a rough spot. Your personal worth and value extends beyond what you may feel you can handle during times of incredible struggle. In fact, the quality of your life is comprised of not only what you ‘do’ and how you ‘feel’, but strongly by what you ‘think’. Recognize that healthy living depends on your attitude and choices whether you have an illness or not. Creating an intention to live as meaningful and satisfying a life as you possibly can awards you a personal sense of self-efficacy and a belief in yourself that you can get through another day.
Spirituality & Chronic Illness
No one can ever be prepared for the tremendous impact, disruption and despair that are brought about by a chronic medical condition. For some people, it creates an inner struggle around beliefs and faith. You may feel abandoned, angry and confused as you try to search for answers to the “why” questions. For others, turning to spiritual practice, meditation or prayer can offer solace and considerable comfort during times when nothing else makes sense. Some believe that there is a larger purpose and meaning behind the illness and look for ways to find gratitude for their life still. Whatever your beliefs may be it is helpful to know that you are not alone in the challenges that you face.
Please contact SoulSpring Counselling for information on how you can receive guidance and support as you move through the various stages of your health challenge toward a place of inner peace and meaning.