Emotional Responses to a LEMS Diagnosis

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by Mary Chapman |

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emotional responses to LEMS diagnosis

Lambert-Eaton myasthenic syndrome (LEMS) is a rare disorder that can mimic other neuromuscular conditions. Because of that and the disease’s slow progression, diagnosis can take some time.

If you have LEMS and now know it’s the cause of your symptoms, such as muscle weakness, fatigue, and pain, you can begin dealing with the resulting emotions of getting the diagnosis. These emotions can range from relief to shock. In fact, it’s normal to feel devastated and go through the stages of grief. The following information may help.

Loss of what you’d envisioned

About 60% of LEMS cases are linked to an aggressive form of cancer called small cell lung cancer (SCLC). If you now must confront a second disease on top of cancer, that may cause more negative emotions.

For LEMS patients who don’t have SCLC, the average age at disease onset is 35, an age at which many people lead full and busy lives. Perhaps you have a young family or career aspirations that you now fear may be affected by LEMS. You may also have a rich social life and wonder how the disease will affect it.

Therefore, a diagnosis of LEMS can cause grief over the loss of the life you’d imagined.


Whether you developed LEMS as a result of SCLC or the disease occurred spontaneously, you may experience a period of denial that you even have a chronic condition. As a normal and necessary part of grief, denial may be helpful in that it can give you time to summon the strength and support to deal with your new situation.


Thinking about the changes to your family life after a LEMS diagnosis can bring panic or anxiety, but these emotions can actually help you gather and focus the energy necessary to adapt.

Acknowledging anxiety and fear of the unknown can be helpful to families during this stage. These feelings are normal, and you should feel that you have every right to them.


Anger is a common stage of grief. You may be angry at those who diagnosed you, or you may become irritable with family members. Insignificant events may suddenly seem important and disastrous.

Keep in mind that anger may be caused by feelings of powerlessness or loss of control.


You may experience guilt, an emotion that people feel about things they have done in their lives that they perceive as bad. Guilt can often come from asking questions such as “Why me?” or “What did I do to deserve this?” It may be hard to accept that some things have no explanation. You and your loved ones should be allowed to express such feelings.


Depression is another normal part of grief. Now that you have received a diagnosis, you may benefit from talking with a counselor or other healthcare professional.


You may become fearful that you won’t be able to properly function as a spouse or parent, and or that the diagnosis will overwhelm your family. However, feeling and sharing such fears and emotions can help you find the inner strength to be open with family about your condition and how best to move forward.


In this phase, you may start to notice that you and your family members are finding ways to adapt to your condition. You may also start to develop new ways of enjoying life and each other again.

Recurring grief

Expect that major events or changes, such as a job loss or an inability to perform a beloved activity, can trigger lingering feelings of grief.

There may be times when the breadth of your healthcare or strained family dynamics overwhelm you. During these times, you may find it helpful to connect with others in similar situations through organizations and support networks.


Last updated: Jan. 5, 2021


Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you read on the internet.