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February 15, 2016

Adapting to a Chronic Condition

by Sharmyn McGraw

by Guest Writer
Dr. Patti Johnson

It takes Two – You and Your Support Team

A chronic condition is one that persists over time without an easily definable beginning, middle and end. After being diagnosed with a chronic condition, such as some types of brain cancer or pituitary disorders, it may seem that your world has been turned upside down. One of the primary experiences of those with a chronic condition is the trauma of realizing that their lives have changed, often permanently.  This requires a great deal of adjustment on an emotional level, as well as, the physical level. While the symptoms and physical suffering can usually be alleviated to some extent, powerful emotions may emerge. You might experience intense anxiety, depression or even anger.  These powerful emotions can feel overwhelming and really throw you off track.  To help you cope, you will need a support team comprised of family members and friends.

While your family members and friends will do their best to help you, it’s also common for them to deal with their own confusing and powerful emotions when you have been diagnosed with a chronic condition.  This may result at times in their withdrawal, avoidance, pressure, unwanted advice, over-concern, and a variety of other less helpful behaviors towards you.

There are several phases of adjustment to a chronic condition that will affect you and your support team. Some people struggle through each phase of their adjustment and suffer intensely as a result. Others move through each phase more easily. This article will outline the phases you and your support team will likely have to work through with some tips on how to do it more easily.

The Initial Phase – Crisis

1.      The Initial Phase – Crisis

With the onset of an illness, you will want information and support to make clear decisions and bring it under control. This requires medical information and interventions. You will have questions and probably worry about how this will affect your life. You may experience confusion and be unclear about what to do next, leading to anxiety. In addition, it is common to have a decreased ability to respond to others during this phase.

Your work at this point is to manage your anxiety, focusing your energy on treatment and healing. Trust that things will get better, and lean on others for support. Their work is to be present for you, check in on what you are feeling, offer reassurance that they will be there, and go to appointments with you. It is helpful to have someone there for support, to ask questions and record information for latter discussion. It’s important for them to ask you what you need, and for you to tell them specifically. Clarity is important.

The Second Phase – Stabilization2.     The Second Phase  – Stabilization

Here you learn to live with your symptoms day by day, and place a focus on restructuring your life according to your diagnosis and treatment. Specifically, it’s helpful to make a conscious decision to lead a structured daily life in which you focus on what you need to do.  Don’t over exert, but test the limits on what you can do.

At this stage your support team may retreat into themselves because it has more than likely been an exhausting and scary time for them too. They may need time to regroup and withdraw somewhat. This can lead to feelings of isolation. Many people find during this phase who their true friends are and who they can count on for nurturing support. It’s helpful to express gratitude to your immediate support team, offer them empathy as well. However, don’t be afraid to express your current needs assertively, but not demandingly, to those who are there for you. During this phase it’s also helpful to broaden your support team by seeking on-line groups who provide information and understanding, or a therapist who can help you work through the emotions and changes you are experiencing.

The Third Phase – Reconstruction3.     The Third Phase – Reconstruction

Reconstruction involves coming to terms with your condition and the changes it has brought. During this phase you come to understand the permanent aspects of your condition, and realize your limitations and abilities more fully. You will likely even push yourself, because of your confidence that you are getting better.  Don’t be surprised if you relapse a bit or feel discouragement. Testing your abilities is common during this phase, as you develop an increased awareness of all that you are able to do or unable to do. The goal during this phase is to build a new sense of meaning in your life, and a renewed sense of self.  Also, you develop a meaningful way to explain your condition to others and choose how or when to share it.

People in your support team may offer unsolicited advice, suggestions, or point out things you need to do during this phase as they see you getting better. They may even want you to “be strong” or “be positive.” They may tell you it’s time to “get back to work” or even “quit work!” This can lead to all sorts of resentments, frustrations, and feelings of isolation. Keep this in mind – you are entitled to a full range of emotions. You are allowed to feel these emotions and entitled to receive empathy and compassion for them. It is helpful to realize that your condition has been difficult for them too, and the advice is an attempt to “normalize” things as they were before. Help them understand, that just because you are feeling a variety of emotions doesn’t mean that you are not progressing in your journey. Tell them that on this journey you are giving yourself permission to feel, and to feel a variety of emotions. This is strength. You are learning to accept the differences in your life and they need to do come to this acceptance too.

Final Phase – Chronic Condition Integration

4.     Final Phase – Integration

This is a culmination of the experiences that your condition has brought into your life, and into the lives of your family and friends. You have moved through the initial crisis and now understand how you have grown from the experience. You will have learned tools to deal with any flare ups, physically or emotionally, and use them to get back on track. You will be more empathic to others and to yourself – and from that developed a better understanding of what your life means.

Gifts sometimes come in strange forms. We don’t ask for a chronic condition – yet once accepted, understood, and adapted too – it can bring wisdom and compassion. The present moment and gratitude can be exquisitely experienced in many new ways.

Further Reading:  Fennell, Patricia A. The Chronic Illness Workbook, New Harbinger Publications, 2001.

About the Author

Sharmyn McGraw

Sharmyn McGraw

Sharmyn McGraw is a patient advocate, charismatic professional speaker and published author. She has first-hand experience as a Cushing’s disease survivor and often collaborates with nationally-recognized neuro-endocrine experts, sharing the speaker’s platform while educating patients and doctors about neuroendocrine hormonal disorders and their impact on our health as a nation. Sharmyn facilitates the largest pituitary patient support group in the country for the Pacific Neuroscience Institute.

Last updated: November 13th, 2019