Living With a Chronic Illness: Why You Should Maintain Hope

Part 1 – What to expect

Kathy vividly remembers her “life turning upside down” after her car accident ten years ago. She has struggled with chronic pain ever since. Despite being a “high achiever,” she has not been able to work since this time and has had difficulty accomplishing her usual household tasks. Martin has had multiple sclerosis for eight years and had to leave an upper management position, after 20 years with the company. Both Kathy and Martin experience ongoing low mood, feelings of uselessness, and an overall decrease in their self esteem. Both feel isolated from others, as they are no longer able to participate in activities with friends or family to the same degree. They frequently feel that significant people in their lives don’t understand what they are going through and at times feel rejected or blamed for their illnesses. Both feel defined by their respective illnesses and are no longer the “Kathy” and “Martin” that they previously were.

The scenarios described above are indicative of what someone with a chronic illness might experience. Unlike more acute illnesses, chronic illnesses are often poorly understood, both by the patient, their family members, and, at times, even by the physicians involved in their care. Well meaning friends or family members may tell them that “it is all in their head,” “they are using their illness as an excuse” or that they just need to “pull up their bootstraps and get on with their lives.” And “getting on with their lives” is essential; however, it is often a long and difficult struggle, with little clarity regarding how to do this.

So what does “getting on with one’s life” mean? Getting on with one’s life involves finding a way to slowly adjust to and cope with the illness, and to ultimately regain a sense of meaning and value in one’s life. However, people need to actively go through a number of stages of dealing with their illness before they can get to this point. The typical stages are as follows:

Initially, the person experiences challenging symptoms that are new to them. They may feel confused, overwhelmed, and fearful about their symptoms. They may begin to experience a sense of loss regarding the impact of their symptoms on their lives and the consequent limitations that they are facing. Some experience a sense of denial and even try to ignore their symptoms. In this stage, the person may see a number of health care professionals, who offer conflicting diagnoses and treatment methods.

During the second stage, a diagnosis may be provided. This can provide relief in explaining what has been happening to them. However, there may be increased uncertainty about their future and how much improvement can be hoped for. The reality of having a chronic illness has sunk in and is very difficult to accept. Many will not accept it and will push themselves past their physical limits, resulting in increased symptom severity. Others may experience an increased sense of despair regarding their illness. Typically, there are ongoing attempts to find the “magic cure.” Many wind up isolating from others who don’t appear supportive, although they may desperately yearn for their support and understanding.

In the third stage, the person has accepted the fact that they have a chronic illness. At this point, they may experience deep grief about the loss of their former “self” and other illness-related losses. They may question why this has happened to them. Consequently, they may question their religious or spiritual beliefs, as well.

During the fourth stage, the person has found a way to integrate the illness into their life. They understand their symptom patterns (i.e., from relapse to plateau) and have learned how to structure their lives accordingly. At this stage, the person has developed new interests that are compatible with their physical challenges. Although some relationships may have been lost, others have been strengthened and new relationships are likely to have been developed. The person has developed a sense of meaning and purpose to their life, despite the physical challenges that they continue to endure. They are no longer defined by their illness; rather, the illness is viewed as one aspect of who they are.

Part 2 – How to move forward

The following psychological strategies can help you move through the four stages, so that, ultimately, you can “get on with your life.”

1. It is essential to let go of blaming yourself – your illness is truly not your fault. It could happen to anyone. It is important to slowly develop compassion for yourself with what you are facing. It takes enormous strength to deal with a chronic illness and being able to validate this can be extremely helpful.
2. It is necessary that you slowly modify your expectations for what you need to accomplish each day. Unfortunately, compared with your earlier days, having a chronic condition necessitates using a different “yard stick” to evaluate your accomplishments. This can be hard to face. However, it is very important to learn to give yourself credit for the “small accomplishments” of each day. Pacing yourself, so that you do small chunks at a time, with breaks in between, is essential, so that you do not “crash” the next day.
3. In the initial stages of the illness, you may experience various emotional changes (e.g. outbursts of sadness or anger) in response to your illness. This is not unusual as you are dealing with significant changes in your life.
4. You may have to slowly learn when you need to ask others for help. Significant people in your life may truly not know how to support you. You may need to educate them with what you need. Finding helpful supports, through friends, family, or a therapist is essential for navigating through these phases. Seeking a support group of others who are facing a chronic condition can also be helpful.
5. At some point, it will be essential to go through a grief stage. This entails actively mourning the losses/changes in your life and the loss of your former self. Taking time in your day to allow feelings of sadness and anger, as well as journaling about your feelings is very important.
6. Writing a narrative about your “journey” with your illness can be valuable. This can assist you with developing new insights about yourself, others, and life. In this process, you can discover your true values and what is truly important and meaningful to you. Surprisingly, you will find a number of qualities that still remain true of you, even with the illness (e.g. empathy, creative side, sense of humor, keen interest in learning new things, etc.)
7. It will be essential to find new interests/hobbies that fit with the limitations imposed by your illness. Reading, writing, creating art work, playing a musical instrument, attending classical music performances in small venues, and having meaningful conversations with others are examples of the many possibilities.
8. You may also have to examine some tough existential questions regarding the unfairness of why the illness happened to you. Reconnecting with a religious faith or a spiritual belief system is enormously helpful in this regard. In the process of answering these questions, you can actually discover a greater sense of meaning from what you have experienced. Ironically, your life may take on a greater sense of depth and purpose, despite your illness.
9. Reading true stories about others who have used adversity to transform their lives in a meaningful way can also assist in developing greater meaning and purpose.
10. Reframing some of your losses and seeing them from a more positive perspective is also essential. For example, perhaps, you are no longer able to do weekly walks/hikes with your closest friend; however, you can attend monthly lectures on art history; or, you can engage in deep conversations about life, over coffee. In fact, despite your losses, your newly developed insights may, in turn be a “gift,” You may have developed a compassion for the struggles of others, as well as a certain “wisdom” about life. Your insights might even inspire others or help them, in turn, create more meaningful lives.

Note: During all these stages, it is essential to continue to see your physician for ongoing monitoring of your condition. Additionally, the strategies described above take time and effort to implement. If you feel that you are not able to move forward through these stages, it is essential to get counseling from a licensed psychologist or counselor.