Learning to Live With a Chronic Illness

Dealing with a Chronic Illness

By, Nicole Martinez, Psy.D., LCPC

There is a great quote that many know by Vivian Greene, “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” To me, this sums up the idea of living a balanced and full life while dealing with a chronic illness. It is about learning to acknowledge your limits, while still keeping your mind open to the possibilities that exist. This can be a very difficult task when living with a chronic illness and trying to navigate your limits from your abilities.

It is not uncommon for individuals with chronic illness to blame themselves. It is not only the case that they think that they are weak, or a failure, but that society reinforces this fact for them. Society reinforces the idea of being strong, that individuals can overcome what they set their minds to. This idea is ingrained in the chronically ill, they feel less than their healthier counterparts and that they are somehow deficient when they can’t overcome what ails them.

One of the factors that makes this feeling worse is those who suffer with what we call “invisible illness.” Many people do not understand how sick and debilitated an individual can be, if it is not physically obvious. Too often people hear, “but you look fine,” when they are feeling terrible. This only reinforces their perception that they should be doing better than is possible. People with chronic illness and invisible disabilities are suffering, it just might not be apparent to others. It is estimated that 10% of the United States population have medical conditions that could be considered invisible disabilities.

In order for the individual to both tend to their very serious health issues, and live the fullest life possible, there are many issues that need to be addressed. First, the individual needs to accept their illness. By this I mean, accept that they have a very real and very serious medical condition, and there is absolutely nothing they could have done to prevent it. Anyone who has been sick for a length of time knows the hopes and often disappointments of the next promising treatment not working, the next specialist not having the answer, or not getting better as quickly as they had hoped.

 Next comes gathering all the information that they can to devise a well-rounded plan for optimum health. This entails acknowledging what they do and do not have control over in their life. They do not have control over the symptoms of their illness, but there are things they can do to help control flare ups. Some of these factors include diminishing stress, eating clean and healthy, getting plenty of rest, and taking part in low impact activities.

Often the person has to shift and adjust expectations they had for themselves, and for their lives. Maybe they will not be able to run a marathon, have children, or be the partner in the firm since they cannot put in 60+ hours per week. However, there are still many amazing things they can accomplish within their abilities. It is a matter of letting go of some things that may no longer be realities, and charting a more realistic course, which can still be full of wonderful goals and possibilities. With this change comes the idea of letting go of being envious of others. It can be hard when you see someone accomplishing the things that you once wanted for yourself. When your friend has a baby, when your sister runs the city marathon or when you old co-worker gets the position that you were on the clear track for, it is easy to become envious. Envy and stress are counter-productive to health and takes away the peace and hope the individual needs.

Another important issue is for the person is to distinguish their illness as part of themselves, but not their whole being. Many people “become their illness.” Their illness becomes their identity. It is ok for us to acknowledge our illness, while still saying that our illness does not define us. It is about acknowledging our limits, but redefining them as well. It is about forgiving ourselves when there is something we cannot do, as our intentions are what truly matters.

The people in your life will learn to know and understand when there are things you are unable to do. They forgive you, so it is important to have that same forgiveness and kindness of self. Another powerful tool can be the knowledge that while we may have our areas with which we suffer, so do many others. There can either be a connectedness to this idea, or an empathy that we develop for them. This empathy for others has a way of coming back on how we treat ourselves. Sometimes helping others who are suffering, ends up helping ourselves. Making even a small impact in the lives of others, or in advocacy of their condition, can have a positive impact on their emotional well-being.

 

Seeing an individual therapist and psychiatrist can have a positive outcome for the individual. They can attend weekly individual therapy sessions to address a number of issues. They can also concurrently see a psychiatrist to address any pervasive mood issues that could be helped with the proper medications. The two can work together as a team to develop an individualized and comprehensive treatment plan that attends to the overall needs of the chronically ill patient.

A therapist can help the individual deal with stress and learn the needed coping skills. As mentioned earlier, the therapist can help the individual define what they do and do not have control over. Once this has been defined, they can devise a plan of action to work on the areas they do have control over. This feeling and realization of control and the idea of forward movement in small, gradual steps, can be very empowering.

Other issues that the therapist can help the individual with are related to the general theme of stress. An individual with a chronic illness is dealing with some significant stressors. Illness can often be unpredictable, no matter how many healthy strategies they put in place. While those strategies can lessen the impact, they do not stop a flare up from happening completely. The individual may have had to adjust to their “new normal,” and numerous life changes. Life changes might include financial changes and concerns, worrying about the quality of their life going forward and dealing with the physical symptoms that come along with their illness.

Individual therapy can help the individual navigate the negative realities and the positive possibilities that come along with living with a chronic illness. They can deal with their feelings of acceptance, envy, anger and hopelessness. They can determine what they have control over and what they do not. They can make a plan to lessen the impact of flare ups, how to connect with people in their community, and how they might be able to give back to others. The therapist can help them decide how to explain their illness to those in their life and what adjustments they need to make in their lives. Perhaps most importantly, the patient and therapist can work to adjust goals and expectations, so that the individual has reasonable and exciting things they are working towards. This can give a sense of hope, purpose, and control.