An ALS diagnosis is a significant, life-changing event. Care must be taken when considering who to tell, what to tell them, and when. There is no perfect formula; the best approach varies from individual to individual and from relationship to relationship.
An individual with ALS may choose to limit how many people they tell to ease this burden on themselves, while others may tell a large group of people all at once. It is also possible to spread out telling people over a longer period of time.
Close friends and family should all be told so that they may begin to provide appropriate support, including making changes to their own lives in order to do so. People that are more distant, such as colleagues, or old friends may not ever need to be told. However, people that find out about the diagnosis through the grapevine or through eventual in-person contact may be upset or offended that they were not told about it earlier.
Telling at least one key individual in each social or professional peer group and asking them to repeat the news to others can ease the burden on the individual with ALS. It may also help those key individuals feel that they are a valued part of the individual's life, as they have been given an important personal task. Conversely, telling key individuals about the diagnosis while also asking them to keep it under wraps may place undue stress on them.
Early symptoms of ALS may not be visible to others. Eventually, muscle atrophy, changes in speech, and difficulty participating in certain activities will become obvious to outside observers. Telling others should happen before it becomes difficult to maintain that nothing is wrong.
Telling others of an ALS diagnosis shortly after receiving the diagnosis is ideal. Doing so eases the burden of having to maintain a secret, and gives others the maximum amount of time to adapt, such as for the purposes of assisting with care.
The complexity of ALS makes explaining the disease itself and the consequences of it quite difficult. Some basic facts about the disease include:
Some individuals may be curious about ALS itself and will want to know more about it.
In the simplest terms, ALS is a disease where motor neurons gradually suffer an untimely death relative to the rest of the body. This causes muscles to weaken, which affects functions such as the use of limbs, and eating, speaking and breathing. ALS is fatal because of the impacts on nutrition and breathing.
Most adults will be able to understand the basics of ALS and the implications of the disease once told. Emphasizing that the disease is progressive, not treatable other than to slow its progression, and terminal is key to creating understanding.
Children, especially young children, may have a difficult time conceptualizing a progressive, terminal disease. They may also be more likely to fear that the disease is contagious and that it may happen to them, especially if they are the descendants of the individual with ALS.
In the case of ALS with genetic causes, emphasis should be placed that it is not certain that their descendants will ever get it, and even if they do, it may be treatable or curable by then, or that they may be very very old when they get it.
The manner of reaction that an individual has to learning that someone they know has a terminal illness can vary widely. The weight of such news often leads to intense emotions, including shock, sadness, anger, ambivalence, ignorance, curiosity, or even amusement. Initially, these responses may seem erratic or inappropriate, but over time, most individuals find ways to process the information and come to terms with it.
Some individuals are very solution-oriented, and may respond with recommendations on how to fight the disease, or promise to do their own research to that effect.