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Testimonies: Living with chronic fatigue and immune dysfunction syndrome

have a predetermined image of

* what the child will look like

* what life will be like with the child

* what they will be like

* even what they will like to do, or how they will earn a living.

When the dream child doesn't arrive, it seems like instead of the person they expected, a stranger has invaded the house. It is not surprising that the rate of divorce among families with disabled children is higher than the national average.

When the illness or accident occurs later, there is not only the grief of family or friends, but now the particular disabled person has their own grief to sustain as well. They have lost so much, it hurts just to talk about it, because it overwhelms them and anyone who will listen.




Grief
Grief and loss accompany chronic illness and disability, but unless you're affected, you may not realize the impact. Let's take a look at what can be lost in chronic illness and disability:

* Self-concept * Friendships
* Freedom * Family support
* Confidence * Sports
* Dependability & Reliability
* Hobbies * Energy
* Dancing * Fitness
* Travel * Driving
* Work * Activity
* Money * Fun
* Health Insurance



There are also additions to life that are not welcome:

* Assistive devices * Hospitalizations
* Doctor bills * Conflicts with employers
* Pills * The Social Security Disability System
* Medical system run-around
* Family doubt, grief, fear

Any of these alone would be definitely uncomfortable - combine them and you have a very bleak picture - without friends to stand by you.

The process of rebuilding after such a big change is a decades-long task. It is a series of two steps forward, three back that gradually, over years of time can improve. But it is easier, faster, and more rewarding when you can share even the smallest victory with a friend.




The "F" Word - Fear
This is the main reason why you will not act on your impulse to remain a friend. Because of the changes that have occurred, you are confused and feel helpless in the situation. You don't know what to say, what to do - so you say or do nothing. It is less work to let a friendship die than to keep it alive.

But you're a busy person - you have responsibilities. Where can you find time for someone who seems to need so much?
- If there was any time to spend with them before they were disabled, then you have to decide to make time again - if you are a friend.

But hospitals give you the creeps.
- That's too bad. Let me tell you who's got a worse case of the creeps - the patient! If you think they like it


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