Living with chronic illness, whether it be of a physical or psychological nature, can be demoralising and at times bring us to the point of despair. The following tips are presented to assist you or those you care for in managing chronic illness.
Accept your condition
Accepting the changes to your life, along with the effects on loved ones, is perhaps the hardest part of living with chronic illness, particularly if the illness or condition is poorly understood. Generally speaking, acceptance of a situation comes from having an understanding of causes and effects pertaining to the situation. When we fail to understand a situation, such as a misfortune that has occurred, or even a person’s actions or words, we can become anxious, suspicious and fearful of future encounters. Acceptance of having a condition that is not well understood is difficult in itself, yet it is made more difficult, when symptoms are erratic and change from day to day.
Some of the obstacles to acceptance are: denial of the situation; anger and resentment that you are sick; despondency; depression; self-blame and shame. These are all part of the grief experience which is quite normal when living with chronic illness. Perhaps the greatest obstacle to true acceptance is feeling guilty that you have become sick. Often associated with guilt and punishment is an underlying belief: “I deserve this illness” and “I don’t deserve to heal.” People may acquire the belief that they have deserved their illness on account of something they may have done in their lives. This may escalate to feelings of shame and the state of self-loathing. We may believe that we are worse than others, that there is something inherently wrong with us, and that we have little value. These beliefs are a form of self-punishment and will contribute to behaviours that sabotage you in achieving your goals, including healing.
Patients of chronic illness may further blame themselves for the effect that their illness has on others, particularly family members, friends and colleagues. Feelings of self-blame, guilt and shame require forgiveness, and in order to be freed from these destructive emotions and move towards a point of acceptance, it is necessary to find a way to forgive yourself. It may be helpful to work with a counsellor on some of these issues. Acceptance is the key to overcoming the consequences of misfortune and
living more peacefully.
Focus on what you can do, not what you can’t do
Everyone with chronic illness grieves for what they have lost. It is easy to become absorbed by thoughts of all the things that you can no longer do. Obviously, continuing to view your situation from the negative position will make it difficult to move beyond despondency. It may seem impossible to focus on what you can do when most of the time you are fatigued or in pain, and are confronted again and again by what you cannot do. However, it is important to keep focusing on what you can do, no matter how insignificant it may seem – perhaps having a shower or getting dressed for the day, or reading one page or one paragraph of a book. No matter how small, what you have managed is an achievement nonetheless, and often has required great courage and perseverance. We can take encouragement from the words of Mother Teresa: “Don’t look for big things, just do small things with great love.” Letting go of our feelings of despondency just for a moment in order to accomplish some small thing, is in itself, an act of great love. Commend yourself on whatever your accomplishments are, no matter how small they may seem. Surrounded by reminders of what you cannot do, it is essential to feed yourself encouragement on a daily basis. It is a great boost also to have a close friend or mentor who is able to provide you with encouragement, particularly in times of feeling hopeless and of little self-worth. Support groups can also provide great encouragement, either through personal attendance or via online bulletin boards. In addition, inspirational readings can be a great source of encouragement and can affirm you.
Grow your Patience
It seems that in chronic illness or in serious misfortune, we are given no choice about the necessity to develop patience. However it can remain a huge challenge when illness continues on relentlessly. Patience goes hand in hand with realistic expectation. When we do not expect to be completely recovered by tomorrow, it is easier to have patience. We may indignantly utter: “Why am I being tested again? Haven’t I learned this already?” The questions themselves are evidence that we have not yet mastered the art of patience and this is certainly a lifelong challenge for us all! With any setback there may be anger and resistance, or depression due to loss of hope. When we realise that there is no point in the struggle, we realise that waiting patiently is the only option. Again, there may be some comfort found in the words of some spiritual writers and in the support of others.
Self-Care and Enjoyment
Self-care is extremely important in managing chronic illness. Finding gentle ways to nurture yourself helps to cope with the challenges of living with the condition. In times when enjoyment seems not possible, it is still beneficial to go through the motions of doing some of the quieter activities that you may have previously enjoyed, or to try something new, even if it is just for some moments of the day. Taking a bubble bath for example, or sitting in the park or on the porch, or watching a movie or listening to music – whatever you choose for the sake of enjoyment is worth it, as it not only helps to soothe you, but it can help you to focus on something other than your illness. It may not always be easy to take the focus away from your symptoms, particularly when in pain or despair, but it is certainly a great boost when you can! It is therefore beneficial to seek ways to experience enjoyment, no matter how small, each day.
Research shows that humour and laughter contribute to positive psychological and physiological outcomes such as: i) decreased stress and anxiety; ii) improved mood and coping; iii) improved performance; iv) increased creativity; v) reduced pain; vi) enhanced relaxation; vii) improved immunity; and viii) improved blood flow, increased oxygenation and lower blood pressure. These benefits would undoubtedly improve not only your personal outlook with living with the condition, but the condition itself. Finding ways to view aspects of the world more playfully can definitely be of great benefit.
Reduce Stress – Do the emotional work!
By far the greatest contributing factor of relapse of chronic illness is stress, and typically, people only improve once they have removed major stress from their lives. It is not possible to be free of all stress, as life continues to happen around us and to us. Living with chronic illness, in itself, is stressful!
Any form of stress, negative or positive, uses the body’s energy resources. Additional adrenalin and other stress hormones that are produced by the body during times of excitement or fear (stress), may give the message that there is ample energy available. This can be misleading, and for people with CFS/FM, can lead to more energy being expended than the body can readily replenish, resulting in an energy drain some hours or days later, and a prolonged recovery period.
It is necessary to be mindful of the cumulative effects of stress on the body when considering energy levels. As unpleasant emotions and thinking deplete the body’s energy and add to pain levels, it is essential to heal difficult past experiences and change unhelpful self-beliefs. Any healing work that leaves out past unpleasant experiences and upsetting emotions is incomplete and will diminish the ability to attain the best possible healing outcome.
As some environmental factors such as certain foods, fumes, cold or hot weather, may have a harmful, even toxic, effect – stress – on an individual, it is essential to be attentive to possible factors and conditions that tend to make your condition worse, and eliminate exposure to these wherever possible. It is advisable to take a food intolerance test to understand which foods your body is not absorbing well or may be adding stress to its metabolic processes.
When not contending with times of disability, managing chronic illness requires a healthy balance of all aspects of our lives such as work, relaxation, sleep and exercise. Incorporating de-stressing practices such as meditation, chi gung, EFT or deep breathing into daily routines helps to reduce stress levels, which assist in the reduction of pain and improved energy. It may be useful to seek professional advice and treatment in order to manage stress levels more effectively.
Support Network
People who struggle with chronic illness need a great deal of support from family and friends. The level of support required may vary depending on your physical and emotional state. Allow others to do the shopping, cooking, washing or transport the children. When energy is in short supply, it is necessary to conserve energy, just to be able to hold together.
Emotional support is also essential, and if you don’t have family or friends who are happy to share your load, seek out a person in a community position such as a minister or become involved in a support group. There are also online groups and people who are willing to connect by phone, which is helpful at times when you are housebound or bedbound. Many people find it beneficial to talk with someone who has experienced similar symptoms and understands their condition, and likewise, others may benefit from your story as well.
With limited energy, it is not possible to remain connected with all of your previous contacts, so it becomes important to select people and contexts that are supportive of you. It can be very draining connecting with people who challenge you or your condition, and it will also be difficult to make improvements in your health until you free yourself from challenging people and situations. There will be periods where it is not possible to connect with anyone at all, but it is not helpful to remain isolated for long periods of time. Symptoms of chronic pain and fatigue and mental anguish can be depressing, and becoming isolated can add to feelings of depression. In lengthy periods of physical isolation due to being bedridden or housebound, communicating with people online can be an effective way to maintain connections and reduce social isolation.
Finally…
We are forever changed by our major life experiences. Circumstances beyond our control may force changes in our lives that we do not like, and may diminish our ability for engagement in many ways, but our intrinsic value as a human being remains nonetheless. We understand that when one door closes, another door opens, but I may never see the doors that open to me in a new phase of my life if I uphold my self-worth in my ability to do or to function as I have always done. Instead, I may remain fixed on being the person I used to be, with all of the things I was able to do before life changed irreversibly, setting myself up for ongoing disappointment when I don’t return to my former self.
In honouring ourselves primarily as human beings rather than human doings, we maintain our inherent self-worth and can better face the reality of our struggles and changed circumstances. When we have been so accustomed to measuring our self-value by our activity levels, it is a difficult adjustment to see value in ourselves by simply being – here in the world, here in this place. Valuing our human being-ness is more likely to lead us to acceptance and patience with our changed conditions, and to be open to opportunities that will allow us to grow into the people that we are now able to become.
Margaret welcomes your comments. You may have your own tips and some insights to share, or some questions or responses to this article.
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