Loss/Grief

Emotions are strong and disruptive in an unpredictable ways. Following are some examples:

Making Plans

All of a sudden we can not make plans the way we used to, even for the near future. We don't know how we will feel even two hours from now, and are not sure we will be able to cope either physically or emotionally. The natural reaction is not to make any plans.

Pain

We might be dealing with chronic pain and do not want anybody to know about it.

Self Image

Our self image has changed and it takes time to get to know the new self.

The Need For Assistance

Simple every day activities become difficult and we might need help even for the most mundane things. Asking for help and accepting it is extremely difficult and can be humiliating and depressing. Depending on the situation, we might need help from others in a way that causes us to lose our privacy and sense of independence.

Shrinking World

The world around us shrinks as the illness takes the foreground. All our thoughts and life evolve around it.

Feeling Like A Burden

We can feel that we have become a burden, not a nice person to be around any more, a person with illness.

Effects on Work

Being ill might affect our job despite legal protections such as the Americans With Disabilities Act. We try as long as possible to act as if we are healthy and keep the illness to ourselves. This might lead to avoiding talking with colleagues and especially with our superiors. It feels lonely.

Financial Implications

The financial implications may be difficult to accept. For example, if time off work is needed for medical reasons that exceeds the employer's sick days or isn't covered by The Family and Medical Leave Act (FMLA), we could not only lose some income, but actually be fired for not being able to perform the job. There may be difficulties because of being Uninsured, or health insurance that doesn't cover all treatments and equipment.

Cultural Stigma

People with chronic illness and disability are often looked down at by society. A person in a wheelchair pays at the supermarket and the cashier gives the change to the person who is pushing the wheelchair. People begin to talk louder and more slowly to you. People stare at physical differences and are not sympathetic or compassionate. It is painful and makes one feel ashamed, angry and helpless. It is a very lonely feeling.

Loneliness

Talking about illness with friends and family often leaves a person feeling as if no one understands. (Many times they really don't). As Noa G said:
"Symptoms and feelings that we talk about might look bizarre to a healthy person. They don't understand why we don't snap out of them. Why don't we push ourselves a little harder, how come we can't do this or that when it is so easy? Well, it is not easy. It is actually extremely difficult for us. We begin to think about the way others perceive us and contemplate about our self image, about our identity and our dreams for the future. We feel misunderstood as there are no words to describe our situation in a comprehensible way. This again leaves us feeling profoundly lonely."

Medications

Medication can be another loaded issue. There is a strict routine of taking medication that has to be adhered to.

• Medications might have uncomfortable and sometimes frightening side effects.
• One of the more disturbing side effects is the change in intellectual abilities. Memory problems are difficult to recognize and are confusing. How do we remember that we don't remember? Here, again, we need an input from others, and this can be embarrassing and frightening. The situation can create a feeling of discontinuity and instability.

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