Living with a chronic illness or disability often creates uncertainty and a lack of predictability. While most of us enjoy autonomy and independence, we also rely on a certain amount of structure and routine in our lives to keep things on an even keel. When our routine is disrupted, as is the case when an uninvited guest such as disability or chronic illness takes up residence in our lives, a certain amount of anxiety may arise.
Coping Abilities Can Be Learned
Living with uncertainty or unpredictability requires patience, flexibility, and resilience—things that some of us are better equipped with than others. Those who lack these traits are usually the ones who have the most trouble with anxiety and depression. These traits are frequently associated with temperament, but life experience also reinforces them.
Two people may experience the same events and have different reactions. For example, some who have unstable childhoods become adaptable and resilient, while others become rigid and controlling. I believe the difference in these responses is partially related to temperament, but also has a lot to do with how we are taught to think about things. Fortunately, we can unlearn and relearn what we have learned.
The Role of Change and Fear in Anxiety and Other Emotions
In my experience working with people who have disabilities, change is frightening. Fear plays a big role in the anxiety and depression that many people experience. The unpredictability and loss of control that accompany disability and chronic illness result in many changes and new experiences. Imagine confronting all of these within a relatively short period; it could be overwhelming even for those with the most sophisticated coping abilities.
Disabilities differ with regard to how they impact people and families, but here are a few changes and experiences people may be confronted with:
- Loss of mobility, abilities, skills
- Trying new adaptive equipment
- Safety issues (falls, toileting, transfer)
- Unusual people, places, and experiences to confront
- Fear of engaging in sexual intimacy
- Shame or embarrassment due to changes in appearance or abilities
- Loss of friends or family members who “don’t know what to say”
- Changes in employment, employability, or skills
- Changes in financial independence
- Dependence on others for personal care, bathing, feeding, etc.
- Health care choices and changes in medical providers
- In-home assistance from strangers
- Uncertainty of prognosis
- Loss of previous identity
The list goes on and on for some people. Coping with any of these changes would be stressful. Confronting several or many is understandably daunting.
Managing Feelings and Behaviors By Changing Thoughts and Beliefs
If you are one who learned how to think rationally and adopted rational beliefs along the way to adulthood, count yourself fortunate. Many of us did not. Or we are still applying the beliefs that worked for us in other situations to our lives today, and find them no longer effective. As stated above, we can unlearn old beliefs that are no longer relevant by adapting our thinking.
It is widely believed that our feelings and behaviors are directly related to our thoughts and beliefs. For that reason, learning how to monitor and adapt our thoughts and beliefs plays a big role in managing our emotions.
How It Works
Example: I often hear men with disabilities say things like, “I was raised to believe that men are supposed to be the breadwinners in the family. Now I am in a wheelchair, on disability, and my wife is working two jobs.”
Risks of this belief in current situation: These men are very likely to struggle with anxiety or depression if they continue to think this way. It is easy to see how that thinking (which was largely true in many families when most of us were growing up) is no longer working for a man who is now living with a disability and unable to work. To continue to think this way may lead to feelings of worthlessness, guilt, despair, and hopelessness (symptoms of depression), or fear, panic, and terror (symptoms of anxiety).
How to challenge beliefs and thoughts that no longer work for you:
- Where did I learn this way of thinking/believing?
- Does this belief/thought apply to my life today?
- Is the thought/belief always true?
- How do I know it’s always true?
- Are there ever exceptions?
- What are some exceptions?
- What is the worst thing that would happen if this were different for me?
- Am I willing to let go of this belief/thinking?
- Am I willing to work on the changes required to adopt a new belief?
Changes required to alter this belief to fit my current life:
- Acceptance of my disability
- Acceptance of my current abilities and limitations
- Honest, ongoing discussion with my wife and kids about my needs and abilities
- Daily discussion with my wife and kids about what I can contribute on good vs. bad days
- Buy-in from my wife and kids about what our new roles are within the family
- Agreement from all family members to make school the first priority for the kids
- Commitment to open communication by everyone, including regular appreciation for how each member contributes and weekly meetings to plan and prepare for upcoming week with backup plans
New belief: “I was raised to believe that men are supposed to be the breadwinner in the family. Now I am in a wheelchair, on disability, and my wife is working two jobs. I have come to believe that all families are different. In our family, I contribute by being the best husband and father I can be given my disability. On the days when I am able, I help around the house and take care of the kids after school. Some days I need more care than others. On those days, I communicate my needs with everyone so they are aware of what I need and I have to offer. We adapt as we need to day by day. I tell my wife and kids how much I appreciate them. I know if the roles were reversed, I would do what she does now. Our kids know what they can do to help out when needed. We let them know that we will try to keep their lives as normal as possible, and make their school a priority. We plan and prepare for the best-case scenario, and have backup plans for the worst-case scenario. It is different, but it works for us.”
Try this: Make a list of how you support your family—emotionally, socially, financially, and otherwise. List each family member and the things you do to encourage, support, parent, protect, teach, and care for each one. Keep this list nearby and refer to it when you begin to think you are not contributing enough to your family.
If your list is empty, consider ways you can contribute and begin to do so. It will make a big difference for you and yours. If you can’t think of ways you can contribute, ask each of your family members for ideas. You might be surprised how much you have to offer.
You can find out more information about managing your feelings by monitoring your thoughts online. If you need help talking to your family or loved one about how to adapt to your current situation, watch for the next article in this series on communication.
© Copyright 2012 GoodTherapy.org. All rights reserved. Permission to publish granted by LuAnn Pierce, LCSW
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