An ALS diagnosis is a significant, life-changing event. There is no perfect formula for what to say, and when to say it; the best approach varies from individual to individual and from relationship to relationship.
Early symptoms of ALS may not be visible to others. Muscle atrophy, changes in speech, and difficulty participating in certain activities will eventually 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 avoids the burden of maintaining a secret, and gives others the opportunity to provide support.
Family and close friends should all be told in a timely manner. Family are often involved in various aspects of providing care; in some cases they may need to make changes to their lives to be able to do so. The more time they have to make such arrangements, the better.
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 of having to do it oneself. It may also help those key individuals feel that they are a valued part of one'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.
The complexity of ALS makes explaining the disease itself and the consequences of it quite difficult. Some basic facts about the disease include:
Some people 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.
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.
People react in many different ways upon learning that someone they know has a terminal illness. The scale of such news can trigger strong emotions such as:
At first, these reactions might appear unpredictable or inappropriate, but with time, most people will process and cope with the news more thoughtfully.
Some people can be quite ignorant about the implications of an ALS diagnosis, especially in terms of its treatability. They may recommend things that they believe will treat the disease and reverse its symptoms. In such a case, one can simply say that those treatments are already being taken or are on a shopping list.