Receiving a diagnosis of a chronic disease that is treatable, but not curable, manageable, but not always completely controllable, can be a devastating experience. There frequently is an immediate sense of being threatened, not only in terms of one’s very life, but more often in terms of one’s ability to continue living life as one is used to. Diseases such as diabetes mellitus, rheumatoid arthritis, coronary artery disease, emphysema, and multiple sclerosis are examples where symptoms can be alleviated and daily functioning can be greatly improved, but the diseases themselves never completely go away. Diagnoses such as fibromyalgia and chronic fatigue syndrome are even less understood as to origin and disease mechanism, and yet the symptoms can be quite pronounced and debilitating. Patients with any long term illness can often feel helpless and even hopeless in their capacity to cope with the changes thrust upon them by their disease. In fact, the emotional disability a chronic disease can engender may be even more debilitating than the physical disabilities the disease may produce.
There is little doubt, both experiential and in the medical literature, that the approach a patient takes toward his/her chronic illness has a significant and often profound effect on both the course of that illness and how well the patient adapts to the changes related to that illness. Being positive and proactive is key, and while there will still be ups and downs, difficult moments and good periods during an illness, one’s attitude can be the force that gets one through, so that a satisfying and meaningful life can still be lived.
The words of Kathleen Lewis from her book, Successful Living With Chronic Illness (Kendall/Hunt Publishing Company, 1994), summarize the issues very powerfully – “…the emotional response to chronic illness can be more crippling than the illness itself; being disabled doesn’t mean you fall off the end of the earth never to return to the land of the living, for there are abilities within a disability; life does go on and can be full even though a former life style is erased almost completely by a chronic illness… (p. Xll). I’ll discuss in three separate columns over the next few months some of the issues that having a chronic illness raise, ideas and values that are important to remember, and approaches that may help one cope in the face of illness and even allow one to grow and transform within the context of that illness.
Know About Your illness
The most important first step is to know all you can about the disease you have. Some patients choose to take the opposite approach of not wanting to learn about the origin and disease mechanisms, symptoms, signs, treatments, and outlook of their illness. That may partly be due to denial that they even have a disease, or it may be secondary to fear of what may happen to them. My own feeling is that having knowledge of your disease enables you to be a more active participant in your treatment. If you can understand the disease and its symptoms, you are better prepared to recognize changes that need attention, progress when it occurs, what to expect in the long range, and how to set reasonable goals. You would also be better prepared to discuss with your doctor the treatment options available and the best way to deal with and adapt to your symptoms.
Knowing your disease can also give you a realistic framework in which to plan your activities and understand the limits you may face in accomplishing what you feel is important. Being prepared for what may physically happen does not mean that you have to live your life in anticipation of what may actually occur. It just means that you have a general concept of how you life is now and how it might be changed, so that if there are life changes related to the disease, you will be prepared to function as best you can within a new set of guidelines. Finally, I think that knowing about your disease can give you a sense of power, not only in participating with your doctor in your own care, but also in helping you determine how you can still live a meaningful life within the context of life changes a disease may impose.
Find the Right Doctor
Another important step is to establish a good, supportive, and enriching doctor-patient relationship. In previous columns, I have discussed the potentially powerful and even sacred nature of this relationship. The first step is to find a physician in whom you have confidence and with whom you are comfortable enough to completely be yourself, share whatever information you need to, and never feel that you will be judged. The best source for a good physician referral is another doctor who has knowledge of the physician choices available or a relative or friend who has had direct experience with the physicians you’re considering. To me, it all comes down to your gut reaction while and after you spend time with the physician you pick.
The most renowned doctor or the doctor who is best recognized in his/her field may not necessarily be the one who is the right doctor for you. If you don’t feel completely at ease with the physician, especially if you are about to embark on a long-term relationship because of a chronic disease, it is not a good match. You may have to discuss many issues, some of them very personal, with your physician over a number of years. In a chronic illness, new challenges and new situations can occur at any time, and you must feel that your doctor will always be there for you. A trusted and caring physician can help a patient get through disease flare-ups, not only because of his/her medical knowledge, but also because of his/her presence, concern, and support. There are many physicians who may not be as well known or well recognized in medical circles, but whose knowledge and expertise are nonetheless extremely competent and whose interactions with patients can be healing.
Acceptance of the Illness
One of the most difficult tasks in having a chronic illness is acceptance of the fact that one indeed does have that illness. Denial is a potent mechanism of coping for many of us, especially when facing an illness. Many people don’t pay attention to early symptoms and wait until these symptoms worsen or even become life threatening. You can’t deal with a chronic disease until you know and accept that you have it. Then you can get the medical information you need from your physician, and even accumulate information about the disease on your own that you can verify with your physician. Accepting you illness and also learning about it, as mentioned above, can give you sense of power because you are better equipped to make decisions that have the most positive effects on your health.
If the diagnosis cannot be well established at first, which may not be unusual in some chronic diseases, acceptance may involve the recognition that the clinical picture is not clear at the moment and that accurate diagnosis may take time. This situation introduces the element of acceptance of uncertainty as well, making the challenges even more difficult. Even with an established diagnosis and indicated treatment, the course of the disease may still be uncertain. While I’ll discuss mystery in the face of illness in a later column, a certain acceptance of the unknown can be helpful in these unclear clinical situations because it opens a broader range of possibilities that may help one have more of a sense of hope.
A big part of acceptance of a chronic disease is self-acceptance. This can be a very difficult challenge, especially if one has impossibly high standards for oneself. Many regard having a disease as a failure, something which demeans them in their own eyes and the eyes of others. I think an important thing to remember is that your illness is only a part of who you are. Defining yourself solely by your disease overlooks all the other aspects of who you are. Because you health is not the same as it was doesn’t mean you’re a failure. It also doesn’t mean you have to give up being you, enjoying aspects of your life that you still can, and living life as fully as possible within your new restrictions. It is essential that you maintain your selfhood and still think positively about yourself, even though some physical aspects of your being have changed.
In addition, as Kathleen Lewis points out in Successful Living with Chronic Illness, “Acceptance needs to be on an intellectual and emotional level” (p.76), meaning that acceptance isn’t just how you think about yourself, but also how you feel about yourself as well. Ms. Lewis goes on to list some “hallmarks of acceptance” with a chronic illness (p75-77). Here are some of them:
“…when the illness only becomes a part of your life and not the main focus.”
“The illness blends in as only a part of your total identity.”
“Being able to identify with people who have similar conditions shows acknowledgement of changes seen in the self.”
“Feelings of bitterness, defensiveness, and anger are released when you
no longer see yourself as a victim, but as a participant, and assume responsibility for yourself.”
“…shed self-pity and become comfortable with yourself and those around you.”
“Accept the reality of your limitations and learn to ask for help in an assertive way…”
“Set new goals when old ones are no longer realistic.”
“See yourself as being no different from others,…handling your problems as well as possible – not martyr, saint, or anyone special.”
“Be able to identify with the similarities of others and not just with your differences.”
“See yourself as a person of value as you are right now.’
“Learn to listen to, understand, and trust yourself.”
Self-acceptance of who you are despite the changes an illness might bring is a productive step toward wholeness within a new reality and a productive alternative to giving up on yourself. You will stand a better chance of finding joy and balance in your life, and even restoring hope. Self-acceptance creates a space for further personal growth and evolution
as a response to new challenges and life situations.
Dealing with Grief and Loss
Coming to terms with a chronic illness also involves the grieving process and recognition of a sense of loss. A person with a chronic illness may have many new losses that are evident immediately or emerge over time. The losses may be permanent or temporary, depending on the disease progression and response to treatment. The important thing is to recognize the losses and grieve for them. It is similar in importance to grieving after the death of a loved one, the loss of a significant relationship or job, a treasured material possession, or a valued life situation that is no longer possible. Grieving within the framework of an illness recognizes the pain inherent in the loss of one’s former physical wellness. Anger and sorrow may also be a part of the process. Grief, obviously, is not pleasant to go through, but recognizing the uncomfortable emotions associated with it can help one accept the loss and the reality of what it means, so that one can move on from the past to the present moment.
Getting through the grief over what one has physically lost with the onset of a disease also helps one realize what strengths are still left, what joys are still possible, and how one might still participate in life as fully as possible. Avoiding the pain and anger of grieving may prevent one from moving on to create and establish a new way of finding a fulfilling and meaningful life. Also, unresolved grief and the underlying anger and sorrow can leave to depression, flare of disease symptoms, or the appearance of new symptoms that may be emotionally based. Grieving is not easy, even though it is part of a natural response to loss. If one has difficulty grieving the personal losses from a physical disease or moving on from that grief, consulting with a therapist or a grief counselor is a good approach that can be very helpful.
Building a Support System – Friends
The last topic of this section of living with a chronic illness is building a support system to help you function the most effective way you can. Rachel Naomi Remen, M.D. so poignantly observes, “Oftentimes the will to live is weakened more by isolation than by disease.”(Hematology/Oncology Clinics of North America, 2008, p.771) A chronic illness can often lead to loss of relationships with friends, community, and even within one’s family.
Good personal relationships with others are so sustaining, nourishing, and valuable even when does not have an illness, but they become even more so and more necessary when an illness threatens with the isolation Dr. Remen mentions. Part of the problem may be how friends and family handle illness in another person. With friends, the illness you have may remind them of their own vulnerabilities, and so they may choose avoidance of any contact with the friend who is ill so they don’t have to face their own insecurities. Also, as Kathleen Lewis points out, “Close friends may ignore you because they can’t express their feelings.” (Successful Living with Chronic Illness, p.10) But the support, caring, and encouragement of friends can be so instrumental in how well one adapts to and copes with a disease that these issues should be addressed.
The first step is to work on being comfortable with your disease. As Lewis states in her book, “Until you are comfortable with yourself, others can’t be comfortable with you.” (p.10) If one has difficulties with this process, counseling can be very helpful in overcoming the negativity you may be projecting as a constantly sick person. Also, one has to choose the friends who are understanding, can relate to your physical situation, and are willing to support you, both emotionally and when you need help with things you can’t physically do for yourself. Even then, it is important to do as much as you can for yourself so that you do not appear totally dependent and helpless. It is important to be as positive as possible, even in the face of a disease, as friends will respond more positively and comfortably to you. You may even have things to teach them about adaptability, acceptance, and self-compassion.
Finally, it is important to ask your friends how they are doing and what is new in their lives. Maybe you can even do something for them that they would appreciate, keeping the friendship on a healthy “give and take” basis. While friendships can be altered by a chronic disease, they still can be fulfilling. And even if friends can’t visit all the time, the phone and email are sources of connection you may use. Finally, if friends don’t call or visit when you wish they would, don’t assume they’ve lost interest. It’s so easy to make negative and damaging assumptions about others – they may just be busy or distracted with their own issues or problems. Give them a call yourself to reestablish contact and strengthen your support system of friends.
Building a Support System – Family
The support of family members is also crucial, but the issues within the families of someone with a chronic illness may be very complex. As Kathleen Lewis points out, “Your family unit and individual family roles may be altered and may have to be rebuilt along different priorities and
guidelines, as ongoing illness becomes part of your daily lives.” (Successful Living with Chronic Illness, p.15) The most important aspect of coping with a family member’s illness is honesty in dealing with the changes an illness brings to family life. The amount of care an ill family member may require, the expected roles that the family member may no longer be able to fulfill, hidden resentments, grieving for a family way of life that can no longer be as it was can all bring out frustrations, anger, sadness, denial, and inappropriate and non-supportive behavior in family members. It’s important that the family’s reactions and thoughts be aired, acknowledged, and worked with to achieve an effective family coping mechanism so that the family members can all function together and interact well with the patient. Sometimes healthier family relationships and dynamics can result from this; other times, the situation may deteriorate to the point that counseling for the entire family or for individual members may be necessary to restore any degree of family functioning. There are also many services available to caregivers to give them some relief and direction, especially when caregiving to the ill family member is a full time commitment.
The point to remember is that a person with a chronic illness who is living with or has a significant connection to his/her family cannot live isolated from that family’s dynamics and the thoughts, feelings, and reactions of other family members. Part of a good support system is a family who honestly confronts the illness of the involved member, deals with the negativity and painful emotions that result from the diagnosis of that member, and then finds a resilient way of coping that works for everyone concerned and supports the patient fully.
Next month I’ll talk about other issues that are related to living with a chronic illness including self-care, living in the moment or mindfulness, hope, anger, and finding joy despite physical difficulties and limitations.
Donald M. Friedman, M.D.
Spirituality and Health