If you are like most people, you have already been coping with all kinds of stressful situations. And now you’re expected to add one more thing to the list: coping with Alpha-1. Read on to learn about different ways to handle stress in your life while dealing with a condition like Alpha-1. 

Some individuals respond to hearing about their Alpha-1 diagnosis by “diving right in” and learning everything they can about it as a means of taking charge of the situation and exerting some control over their condition. Other people prefer to learn about Alpha-1 at a slower pace because it allows them to absorb the information and consider their questions. These are just two examples of the kinds of coping styles people commonly use when they learn about their medical condition.

In this article, we will discuss the various ways people cope with problems in general, and with Alpha-1 in particular. We will talk about common emotional responses many people experience when they learn about having a medical condition like Alpha-1 and we will provide some suggestions for how to deal with this stress. Although we will describe some skills and strategies that can help you deal with many common emotional problems, this information is not meant to be a substitute for seeking professional counseling should it be needed.

Recognize How You Experience Stress

Becoming aware of how our bodies and minds react to stress can help us regulate our responses to the stressors in our lives. Our bodies are constantly working to maintain a normal state of balance, a condition known as homeostasis. During times of stress, your body routinely makes a series of adjustments to meet the changing demands of the situation at hand. To better understand the balancing act our bodies perform every day, it is helpful to make a distinction between acute (short-term) and chronic (long-term) stress reactions. We experience acute stress when confronted with a dangerous or threatening situation. Instantaneously, hormonal changes occur, such as the release of adrenaline and cortisone, which increases blood pressure, heart rate, and respiration. In fact, during an acute stress reaction, blood flow can increase by as much as 400 percent in order to prepare the legs, brain, and lungs for the added demands. Other major body systems, such as the digestive system, are temporarily shut down during stressful situations.

Chronic stress can occur when our bodies are in a heightened response state for a prolonged period of time. If we have not learned to manage our stress effectively, a constant exposure or accumulation of stressors will eventually cause the brain, heart, muscles, and lungs to become overloaded, leading to both physical and psychological harm. Many studies have shown that a number of medical conditions, ranging from indigestion to heart disease, can be caused or made worse by chronic stress. No wonder we feel so physically tired when the demands placed on us outpace our capacity to deal with them.

In addition to the physical reactions to stress discussed above, we frequently experience emotional responses to stressful situations as well. Your emotional responses to a diagnosis of Alpha-1 may be similar to the kinds of feelings people have whenever they experience a significant event such as an illness, divorce, loss of a job, or a death in the family. Even contemplating a loss that may occur at some time in the future can provoke profound feelings.

Psychologists have identified a set of emotional responses to loss, known as the Grieving Process, which includes five stages. As we adjust to traumatic loss, we are likely to experience many of these emotions, although we do not necessarily proceed in a step-by-step fashion from stage 1 to stage 5. Sometimes we go backward and forwards as we move through this process, and there is no set time limit for completing any of these stages.

The five stages of grieving:

  • Denial: When confronted by a major stressor, it is common for people to say, “I just can’t believe it!” Learning that you have a genetic condition that has the potential to affect your health in profound ways can be shocking. You might find yourself saying, “that doctor doesn’t know what he’s talking about,” or “so what if I have Alpha-1. It’s no big deal.” Denying the importance of your diagnosis can be a valid way of saying, “I’m just not ready to deal with this yet.”
  • Anger: When you learned of your diagnosis, you might have felt that you did not deserve this, and that life has been unfair to you. Perhaps you asked yourself, “Why me?” It’s important to remember that anger is a normal part of the grieving process. Trying to repress your anger often means that it expresses itself in unintended ways, like nagging others or pointing out their imperfections. Camouflaging your anger makes it more difficult for others to respond to you in a constructive way.
  • Bargaining: The next stage of the grieving process is often called “bargaining.” At this stage, people commonly want to make up for any past mistakes they might have made. Some Alphas feel guilty for not having taken better care of their health, particularly if they were smokers, or if they allowed themselves to get “out of shape.” Others may have regrets about spending too much time at work and not enough time with family. You might feel as if time is running out, and that you still have not done some of the important things you had intended to.
  • Depression: Generally, when we feel depressed, we also feel weak and tired, and lack the desire or the inclination to do much of anything. However, it is during this stage of the grieving process when we are doing two very important things. One of those things is that we begin to think about how this loss will affect our lives. We might worry about finances, our independence, our role in the family, or our ability to have intimacy. This is hard work. After we have had sufficient time to contemplate these matters, we can then begin to prepare ourselves for the way these losses will impact our lives and how we will cope with them.
  • Acceptance: The final stage of the grieving process is acceptance. Acceptance does not necessarily mean that an individual has “resigned themselves to their fate” or that they have “given up.” Rather, it signifies the recognition that we cannot control all of the events that shape our lives and indicates a readiness to move on. Many people experience this stage as a time of reflection and renewal. Some people see this stage as an opportunity to reach out and share what they have learned with others. Others experience this stage in a more solitary fashion.

There are also other common emotional responses many people experience when they learn that they have a chronic medical condition, such as confusion, anxiety, and fear.

Find Ways to Help Cope with Stress 

Fortunately, there are a variety of relatively simple techniques for managing acute and chronic stress that you can learn to use on your own or with the help of trained professionals. Many of these stress management methods have been thoroughly researched and have been shown to be effective at improving how we respond to stress. Mastery of these techniques can help you to calm your immediate reactions to stress, relieve the built-up tension that accumulates with chronic stress, and maintain a healthy state of balance.

Some effective ways to manage stress include: 

  • Listening to music: Many people find that listening to music can be very relaxing. It is especially helpful if you are able to do this when you will not be distracted. There are apps, streaming services, and even CDs providing music and playlists you might like, as well as nature sounds. For some, the use of headphones or earbuds can help promote a relaxing listening experience
  • Fitness and relaxation exercises: Physical exertion can release a lot of built-up tension. Stretching exercises, such as yoga, have been shown to be beneficial as well.
  • Communication: Sharing your feelings with someone who cares for you can be a real comfort. There is value to be found in feeling that you are understood. It is especially helpful when your partner in conversation does not frequently interrupt you or offer you unsolicited advice.
  • Group and individual counseling: You may wish to seek out the services of professionals who specialize in stress reduction. Your healthcare provider or community health center may be able to suggest workshops, support groups, or individual therapists who can provide stress management instruction.
  • Meditation: By meditation, we do not mean “thinking about things.” In fact, meditation could be described as “not thinking about things.” Meditation is a form of exercise for relaxing the mind. Place yourself in a comfortable position, close your eyes, and remain quiet and still. Become aware of your thoughts, almost as if they were written on ticker-tape or scrolling across the bottom of a TV screen that you see in your “mind’s eye.” Let these thoughts “scroll away” and vanish. Repeat this process as new thoughts enter your mind and then vanish. Meditation sessions may be gradually increased over time from 10 to 30 minutes.
  • Biofeedback: Biofeedback is a technique that uses a monitoring device for displaying information about how your body is functioning, such as your heart rate or muscle tension levels. As you watch the monitor, a therapist will guide you through some relaxation exercises. The monitor immediately shows you which kinds of exercise produce the best effects. Generally requiring more than one session, biofeedback can teach you how to relax on your own without the use of a monitor.
  • Self-help videos and books: Additional materials describing each of these techniques, as well as many others, are available at bookstores, libraries, and on the Internet.

While these are great techniques to deal with stress in the moment, we also utilize more broad coping techniques when dealing with stressors in our lives. Whether you are aware of it or not, you already have a set of coping skills that you have used throughout your life. When you pause to think about how you tend to cope with stress and consider if you might want to try something different, you are developing a coping strategy. The strategies you choose often depend on the situation and what you found to be helpful in the past.

Many psychologists have studied the various types of coping mechanisms people commonly use. One generally accepted method of categorizing these coping styles consists of the following basic types of responses.

Eight ways of coping:

  • Confrontive coping: Describes aggressive efforts to alter the situation and suggests some degree of risk-taking.
  • Distancing: Describes conscious efforts to detach oneself and to minimize the significance of the situation.
  • Self-controlling: Describes efforts to regulate one’s feelings and actions.
  • Seeking social support: Describes looking to friends for emotional support.
  • Accepting responsibility: Acknowledges one’s own role in the problem along with trying to put things right.
  • Escape-avoidance: Describes wishful thinking and behavioral efforts to escape or avoid the problem.
  • Planful problem-solving: Describes deliberate problem-focused efforts to alter the situation, coupled with an analytic approach to solving the problem.
  • Positive reappraisal: Describes efforts to create positive meaning by focusing on personal growth. It may have a religious dimension.

Try thinking of situations where you have used each of these eight ways of coping and evaluate how effective they were at achieving the outcome you had hoped for. Do you tend to use one or two methods more than the others? Are there some coping skills you hardly ever use? Consider sharing your self-appraisal with someone who knows you well and compare your observations. In general, you should find that active coping methods are better at solving problems than passive ones. The more you learn about what works for you and what doesn’t, the more successful you will become at using the coping skills that yield satisfying results for you.

Seek Support from Those Around You

There are many other resources that are available to you, should you wish to seek additional help with finding solutions to complex emotional problems including:

Mental health professionals

If you would like to obtain help from a mental health worker, but are unfamiliar with how to evaluate their credentials, the process of selecting a therapist can seem daunting. You can obtain a list of providers from your insurance carrier, your healthcare provider, or from friends or family members who may have experience with a particular counselor. Many employers have Employee Assistance Programs that can also refer you to qualified professionals. In any event, you should be willing to meet with a number of therapists to find an individual that you like.

Your counselor should be someone you feel you can trust and who makes you feel safe, who has a plan that makes sense to you, both in terms of identifying your problems and in prescribing treatments, and who inspires confidence that he/she is going to help you feel better.

Finding a support group

An AlphaNet Coordinator can tell you if an Alpha-1 support group has been formed in your area. Many Alphas find that these discussion groups provide the special understanding they need to feel appreciated, and offer solutions that have worked for other Alphas. If you have access to the Internet, you can go to www.alpha1.org/alphas-friends-family/support/sg/ for a list of support groups in your state.

The role of social media

With the accessibility to the internet and social media, you may find the support online that you cannot find with family and friends. There are sites that are moderated by a professional, knowledgeable in Alpha-1. There are others that are managed by someone with an interest in Alpha-1; for example, there are many groups on Facebook for people with Alpha-1. These sites can be a great source of support from others that have some connection to Alpha-1. One word of caution: the sites that are managed by a peer or group of peers might contain information that has not been verified and may be misleading. Always ask a medical professional when you have medical questions. If your provider is not familiar with Alpha-1, there are doctors at Clinical Resource Centers that are experts in Alpha-1.

Define Your Goals and Values

You may find that having a diagnosis of Alpha-1 provides you with an opportunity to pause and reflect about what is most important to you in your life. What makes your life meaningful? What do you want to make sure continues in your life? Which things are okay to give up, if necessary, and what things will you fight to retain?

Identifying what you value most in life is often the first step people take to define their goals for the future. To help you define your goals and values, you might want to try this fanciful exercise. On a separate sheet of paper, write a description of your ideal day — not a vacation day, not a compromise day — but a day that you feel represents the kind of usual day you want to live. As you go through the hours of your fantasy day, using as much detail as possible, describe three things: what you are doing, where you are, and who you are with.

After you’ve completed describing your ideal day, take some time to evaluate each of the elements of this day:

1) Divide the elements of your ideal day into three categories:

  • What is indispensable?
  • What is optional but desirable?
  • What are the frills?

The purpose of categorizing the elements of your day is not to rule out the frills. You’re entitled to everything you want — even the frills. What you’re doing here is zeroing in on your priorities, the things you really can’t live without. What would your ideal day look like if it contained only these indispensable elements?

2) As you assess these indispensable elements, ask yourself which of these things you already have. Perhaps our imaginary person already has a piano, or a guitar, or a great stereo system. What do you have?

3) And finally, which of your indispensable elements is currently conspicuously missing, and what is standing in the way of bringing those elements into your life?

This exercise can be a fun game to play with friends and family members. Perhaps it will help you to rediscover some of the things that are really important to you. Share descriptions of your ideal day with your group and see if you can help one another figure out some ways to make the important parts of those days become a reality.