Dealing with Chronic Illness
Whether or not you’ve been officially diagnosed with a vestibular disorder, you’re here because you’re living with one. Whatever your personal range of symptoms, this illness has impacted your life and the lives of those around you. There are a lot of deep emotions that go along with that. We spend a lot of time talking about the physical aspects or our illness and how those impact our lives. Just as important should be a discussion of the emotional impacts.
A vestibular disorder is life altering. For those of us that are lucky, over time we may recover. That may be a total, spontaneous recovery. Or, it may be getting to some acceptable percentage of normal based on time, lifestyle modifications, medication, or some combination of these things. Some of us have lived with these symptoms for decades and may continue to for the rest of our lives. That’s ok. We can become resilient and learn to thrive. Whether we have this for six months or decades and no matter how severe our symptoms, we can be happy, productive and joyful people. It is possible, but it requires us to think of our emotional, mental and spiritual health as just as important as our physical health.
A vestibular disorder can take away a lot of things: our sense of who we are; our ability to think clearly; good health, wellness and comfort; our career; income; self-control; independence; hope; dignity; certainty and the future we had planned. It can seem like the foundation we built our lives upon has shattered. Though cognitively we know life is not fair and there are no guarantees, this is a major blow. It leaves us reeling and groping for answers and help. It brings us to a place of grief for all that we had that might now be lost. It is a physical crisis, a financial crisis and an existential crisis. Who am I now? Why has this happened to me? Is this forever? What will become of me and my relationships? How will we survive without my income?
We cannot go back to the past to reclaim what we have lost. The future is uncertain, but it is not without hope. We can make the most of what we have in the present as the circumstance exists right now. Everyone’s response to grief is unique to them, but each of us can find our way through it.
Begin by giving yourself permission to be angry, resentful or disbelieving. Allow yourself to mourn the loss of what your life was like before. Anger, denial, depression and guilt are all aspects of complicated grief. These are normal responses to what seems like a hopeless, unfair and unending trial none of us deserves. Talk about your feelings.
It is ok to ask for help in dealing with the emotional impact of this illness. You are a whole person, with physical, emotional, spiritual, mental and social needs. Take care of the whole you. Acknowledge your grief, allow yourself to experience it so that you might move through it and find peace. Seek the help of a qualified counselor, religious adviser and the friends you make here at mvertigo. Bring your family and friends into the grief process. They, too, are grieving for the person you once were and the relationships the way they used to be. Find peace, acceptance and resilience together.
What if I can’t move forward? Understand that because the illness is chronic, the grief has no set end date. This type of on-going grief is called complicated grief. The National Cancer Institute criteria for complicated grief is a grief pattern that lasts over six months, causes significant impairment in social, occupation, or other areas of suffering and has at least four of the following symptoms:
- Purposelessness or feelings of futility about the future
- A subjective sense of numbness, detachment, or absence of emotional responsiveness
- Difficulty in acknowledging what has happened
- Feeling that life is empty or meaningless
- Feeling that part of oneself has died
- Shattered worldview (lost sense of security, trust, control)
- Excessive irritability, bitterness or anger
For those of us with chronic illness, we can experience infinite losses or perpetual complicated grief because the illness doesn’t end. When we lose our health, especially when we lose basic functions like walking, talking or memory, we may also lose our status or identity. This lowers our self-esteem and destroys our body image, which promotes anxiety and depression, which then exacerbate our symptoms and become a vicious cycle. These many losses, taken together and seemingly relentless, can be enormous. This can lead to chronic sorrow and sadness and the fear of pain, disability, recurrence and death. It is this fear that keeps us from moving forward emotionally.
It also puts tremendous strains on our relationships. Our ability to provide for ourselves independently may diminish. Our loved ones must shoulder more of the financial burden. They become caregivers. Together, we become isolated from the life and social networks we used to enjoy as life becomes centered around the illness.
Because our illness is chronic, we continue to experience loss. Infinite losses, because of their constant and unrelenting nature, can put you in a state of constant grief. How do we come to acceptance if the grieving process can never end?
Start by finding someone to talk to. Find a grief counselor experienced in chronic illness. Talk to us here at mvertigo who understand what you are going through and are experiencing it in our own lives. Find out what is working for you and what isn’t. Find ways to reinforce the positive for yourself. Find a safe haven to cry and vent where you are not judged or placated. This is complicated. Most people will not understand. Find a place that allows you to be understood. This site is a start.
Many times, emphasizing what you can do to find new interests, structures, and routines could help you. This in turn can help give you new coping skills and outlets for your feelings and emotions. This is important. Because learning new coping skills will help you not only to learn and accept the losses and limitations of chronic disease, but also allow you to transform your experience into something livable and bearable. The emphasis cannot be on what was, but on what can still be. There is much that can still be. We can still love. We can still see beauty. We can still connect to something bigger than ourselves. We may not be who we were before. We might become even better.
Coping and Compensation
One thing that we can all do, no matter whether we are too dizzy to stand or still able to work, is to practice mindfulness exercises. We talk a lot on this site about compensation. Usually, we’re talking about our brains learning to compensate for our loss of balance or to reduce visual vertigo. In this space, we’re talking about emotional, mental and spiritual compensation to help us deal with the reality of living with chronic illness. Mindfulness exercises, including formal acceptance and commitment therapy (ACT), can help us to process grief and loss and may also help us to calm anxiety or relieve depression. This illness responds to stress. Through mindfulness, we can reduce stress and reduce this trigger.
One thing mindfulness exercises help us do is to recognize that our symptoms are always in flux. They wax and wane or affect some portion of our bodies one day and another the next. Understanding that our symptoms change allows us to be mindful of the fact that though right now this may seem unbearable, it is likely to change. Knowing that makes living through the episode at the moment more tolerable. The point of mindfulness exercises is to get beyond the place where fear drives our behavior and consumes us. It allows us to shift our perspective and see beyond the present suffering to understand that change is coming. Mindfulness can also tell us that though the initial few weeks of a new medication trial are hard, they are worth the effort because we are always moving forward to find a way to heal and improve our quality of life.
Mindfulness can ground us to the present and help us look to the future, instead of focusing on the past. By learning to be in the present, in nonjudgmental awareness, we can decrease stress and reduce our symptoms. Obsessing, worrying and playing things over and over keep you stuck. In this sense, asking why can leave you helpless. Being mindful invites you to accept the reality and work with what you have.
Mindfulness can be described as maintaining contact with the present moment rather than drifting off into automatic pilot. Mindfulness allows an individual to connect with the observing self, the part that is aware of but separate from the thinking self. By consciously taking a step back from our anxiety, we can often reduce it and in doing so, lessen the severity of our symptoms.
Mindfulness helps us to accept the difficulties that come with living a life with chronic illness. Mindfulness is the ability to allow internal and external experiences to occur instead of fighting or avoiding the experience. If someone thinks, “I can’t stand it anymore,” that person might be asked to instead say, “I am having a hard day today.” This effectively separates the person from the thought, thereby stripping it of its negative charge.
When you experience painful emotions, such as anxiety, being mindful helps you to open up, breath into, or make space for the physical feeling of anxiety and allow it to remain there, just as it is, without exacerbating or minimizing it. The idea is to become an observer of your feelings. Rather than being reactive or over-reactive to our feelings, we take a mental step back and think about why we are feeling the way we are. Once you understand the reason for your anxiety and fear, you have the ability to act upon it, rather than continue to feel controlled by it.
We separate ourselves from the fear, anxiety and grief. We’re still experiencing these things, but we take a step back to allow ourselves some perspective in a non-judgmental way. This allows us to become more resilient and to shift the focus to what we can do rather than what we’ve lost. It gives us tools for being active in our own healing.
For example, if you’re mistrustful or your diagnosis or treatment, one thing you can do instead of fearing and dreading appointments with your doctors, is to learn as much as you can about your condition. You can document how you feel daily for a month. Thus, armed with information, you can become an active participant and decision maker in your own care. Empowering yourself this way helps you to feel less like a victim of this illness and more in charge of your own life.
Mindfulness exercise’s premise is to teach you that the only certainty in life is change. This realization can be at times more empowering for patients who are desperately and often frantically trying to fix things. At times, the best thing to do to solve a problem is nothing at all and to just slow down and try to see things as they are. We are all experiencing powerful emotions and sensations. These include grief and loss, but these same emotions can be transformative in helping us to learn to thrive with our condition as it is now.
Perhaps the most important aspect of dealing with chronic illness successfully is acceptance. Don’t confuse acceptance with surrender. We are not giving in to the illness. We are not resigning ourselves to a life of suffering. We are instead accepting our reality as it is. Acceptance is the emotional tool that allows us to move forward. Once we accept reality for what it is, we can start to identify the things we need to do to improve our quality of life and take action on those things.
Acceptance can help us develop emotional resilience. Trying to suppress, manage or control our emotions creates more challenges for us and can worsen our condition. Acceptance helps us to change the way we think about illness and emotional pain to learn to live healthier, fuller lives.
Formal acceptance and commitment therapy (ACT) is a mindfulness approach that has been used to successfully treat substance abuse, psychosis, anxiety, depression, chronic pain and eating disorders. Acceptance and Commitment Therapy (ACT) aims to help you:
- Accept your reactions and be present,
- Choose a valued direction and
- Take action.
Some acceptance strategies include:
- Letting feelings or thoughts happen without the impulse to act on them.
- Observe your weaknesses but take note of your strengths.
- Give yourself permission to not be good at everything or not be at your best every day.
- Acknowledge the difficulty in your life without escaping from it or avoiding it.
- Realize that you can be in control of how you react, think and feel.
ACT teaches us to accept what is out of our control and to observe our reality non judgmentally; be aware of where we are right now; allow ourselves to experience our emotions but understand that we are more than just what’s happening in the moment; discover what’s important to our needs; and set goals and actions to help us move to a better place. Accept what is out of your personal control and commit to action that improves and enriches your life.
Finally, a word about exercise. Many of us avoid what is painful or unpleasant. With vestibular disorders, this can be an ever-contracting circle of activities until we’re housebound, lonely, isolated, miserable and afraid. That is no way to live. One of the consistent themes of those who’ve learned to thrive with this illness is the need to push yourself. Each of us has a threshold of activity. For some of us, that threshold may be very low. Even so, you can do a little more than you think you can every day. Our bodies are machines that get better with use, this includes our minds. Exercise makes us feel better, reduces anxiety and depression and lowers our symptoms. Be mindful of going over your threshold, but don’t be afraid to do just a bit more than you are comfortable doing. You’ll find that what you couldn’t do yesterday you can do tomorrow. Don’t let your life get smaller. Push your boundaries. Listen to your body and know when it’s time to slow down or stop for the day, but don’t stop forever. Keep going back. Expand your world again.
We are here for you. However, if you are stuck in perpetual grief, please find a grief counselor that has experience dealing with chronic illness. Mindfulness can be practiced in as many ways as there are people to practice it. Some forms include yoga, meditation, qigong, and formal Acceptance and Commitment Therapy. Learn to focus on what you can do to improve your quality of life and help you find balance and meaning. Find what works for you and learn to thrive just as you are.