How to Share your ALS Diagnosis

Hearing from your doctor that you’ve been diagnosed with ALS is difficult. Telling those you love about your diagnosis can be almost as hard. When do you tell them? How do you tell them? What should you say? 

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You’re in control of when you tell people about your ALS diagnosis. Many psychologists recommend that you wait until after you’ve come to terms with the diagnosis and feel emotionally ready to tell others. However, waiting also has its downsides. Close family members will surely notice something is wrong, even if they don’t know what it is. They may feel hurt when they later learn that you’ve been hiding something from them. Plus, the support you receive from close friends and family is important from the start. So, there are key people in your life that you’ll want to tell almost immediately. For others, you’ll want to wait and have a strategy in place before sharing the details of your situation. 

The details you share will differ depending on the person and their relationship to you.& But there are a few basic points you should probably include:

  • You’ve been diagnosed with ALS, or Lou Gehrig’s Disease, which is a motor neuron disease that affects voluntary muscle movement.
  • ALS is not contagious.
  • The disease is progressive, meaning the symptoms will become more severe and more noticeable over time.
  • ALS affects everyone differently, so there is no way to predict how quickly it will progress or what muscle groups it will affect.
  • There is currently no cure for the disease.
  • Though ALS may change you physically and affect your ability to walk or talk, you’re still the exact same person inside.

People may have questions, and it’s okay to tell them that you don’t have all the answers or simply aren’t ready to discuss them right now. You can always refer them to our website for more general information about the disease.

How you explain ALS to your children depends largely on how old they are. With younger children, explain it to them in simple terms they’ll be able to understand. It can be as basic as, “I have an illness that will make me weaker, and I’ll need help doing some things.” You don’t have to give them all the details, especially not right away. But it’s important to be honest with them and let them know what is going on. 

Teenagers are more capable of understanding the details. They are also capable of finding those details online, so it is best to be open with them and let them hear the facts directly from you. 

Obviously, learning that a parent has ALS can be very hard on children. Depression is not uncommon, and kids may benefit from counseling to help them cope. Some kids want to help, and playing a role (however small) in providing your care can help them feel needed and useful.

Telling parents, especially elderly parents who may be in poor health, is another common concern for newly diagnosed people with ALS. Some experts recommend telling elderly parents in stages, to reduce the immediate shock. You can initially tell them that you have some medical symptoms that you’re checking with a doctor about. A little later, you can explain that the tests found something, but that you’re getting a second opinion. Eventually, you can fill them in on all the details.

Telling people at work may require some research and planning, as ALS can affect your ability to continue doing your job. There may be questions about what accommodations your employer must provide to help you keep working, if that is your goal. You’ll probably want to talk with your doctor or other people you trust first, and know both your plan and your rights before bringing up your ALS diagnosis with your employer.