Support > Coping with Paraneoplastic Neurological Disorders (PND)

Coping with Paraneoplastic Neurological Disorders (PND)

Coping While Waiting for a Diagnosis – Dealing with Uncertainty

Whether you have just been diagnosed with a PND, suspect that you have PND, or are waiting for a diagnosis or treatment plan; it is common to experience some distress related to the uncertainty of your situation.

You may have many different emotions:

These emotions may feel overwhelming.

They may make it difficult to think clearly, eat or sleep.

Common emotions that may occur either alone or in combination include:

  • Fear and worry. It is common when you don’t know what to expect, that you worry about what might happen. This includes fear of not being cured, being in pain, paying your bills etc.
  • Sadness and Depression. Early signs of depression include feelings of hopelessness, loss of interest in people or activities, loss of interest in food, crying often, change in energy level or sleep problems- either sleeping too much or too little.
  • Guilt. You may think you caused the cancer. You may blame yourself for upsetting the people you love. You may worry about being a burden to others.
  • Anger. It is normal to ask: ‘Why me?’ Anger may also come from feelings that are harder to show, such as fear, anxiety, helplessness.
  • Loneliness. You may feel no one understands what you are going through.
  • You may have trouble believing that you really have cancer. You may think there has been a mistake in your diagnosis. These thoughts and feelings give you a chance to adjust to your diagnosis.

“Managing” Emotions

It is important to recognize that a range of strong emotions is normal and to be expected. You can’t control your emotions. You can control whether you express your emotions or hold them in—whether you talk about them or how much you allow yourself to experience them.

Feelings you ignore will come back. When they come back they may be harder to recognize, understand and address.

There needs to be some time, space, and permission to experience the emotions of being diagnosed or suspecting a diagnosis of PND.

It is often helpful to talk to someone who understands these feelings. This may include family, friends or your health care team.

A listener doesn’t have to have the answers. Just listening can help.

Strategies for Managing Uncertainty

Modify your daily schedules to shift the focus from worrying about illness and uncertainty to more constructive, manageable tasks. Identify a support system and allow others to help you when needed. Remember it is ok to ask for help.

Educate yourself—learn as much as you can about the disease.

Set goals—identify short term goals as focal points for certainty, such as talking with your healthcare team about what to expect between treatments and visits, and writing down questions to ask your doctor in between visits.

Do not make the illness your identity—focus on other aspects of yourself. Take part in non-illness related discussions, activities and relationships.

Find a safe place to let down—to share your distress with those who will understand and support you. Choose a support network by selecting people with whom you can share illness information, and who are likely to offer support rather than create more distress.

Take charge in making decisions about your illness and its management. People who participate in their care have less distress than those who are passive.

Take care of yourself; the proper rest, exercise and nutrition are important. Consider integrative therapies such as meditation. Taking care of yourself helps you to regains some control over your life.

Think about resources you have used in the past to help you cope with uncertainty and stress.

Keep to your routine. Rituals can reduce feelings of uncertainty and provide structure and support.

Reduce as many current stressors as possible. Pay attention to your close relationships and engage family members in your efforts to manage uncertainty.

Determine whether other stressors; past or present are contributing to current feelings. Talk to someone about these things, if you find it helpful.

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