Mental Health and Depression with NMO

Getting diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMOSD) can put you on an emotional journey. It is not uncommon to have a wide variety of feelings.

Mental health concerns and NMO can occur together. Some of these challenges or feelings may include:1

  • Anger
  • Sadness
  • Anxiety
  • Depression
  • Grief
  • Uncertainty
  • Isolation

It is normal to want answers and to know what could be causing your mental health challenges. These answers do not always come, and that can leave you feeling more confused, angry, or upset. Learning more about these challenges can help guide you on your path in living with NMO. This knowledge can help you gain the emotional strength you need to tackle the hurdles that living with a rare disease can bring.

Anxiety

Anxiety typically happens in response to things that happen in your life, such as living with the uncertainty and stress of having a rare disease like NMO. Different stressors, like financial uncertainty and worry about the future, can trigger or worsen anxiety. There are a number of effective treatment options for dealing with anxiety. The first step is to bring your anxiety to the attention of your doctor. Your doctor can refer you to a mental health professional who is trained to help. 2

Treatment approaches that address those life situations may be useful. These include:3

  • Psychotherapy
  • Counseling
  • Stress reduction training

Along with these non-drug options, there are some medicines that are effective in treating anxiety. Talk to your doctor about treatment options and which one might be best for you. 3

Depression

Depression is common and debilitating among the general population. More than 17 million adults and nearly 2 million children in the United States are diagnosed with depression each year. Depression is more than just sadness – it is a serious mood disorder that affects how a person feels, thinks, and handles daily activities.4

It comes as no surprise that depression is one of the most common coexisting conditions with neurologic disorders like NMO. Among those with brain and spine disorders, depression has been linked to:5

  • Decreased quality of life
  • Decreased ability to manage taking medicines as directed
  • Increased disease severity
  • Difficulty getting and keeping a job
  • Memory problems

Though common and disabling, depression in those with NMO may not be directly caused by the disease itself. This means that damage to the brain and nerves may or may not be a cause of depression in NMO. Factors like impaired walking, movement, and vision functions may contribute. Also, symptoms of pain and fatigue from NMO can make depression worse.5

Because NMO is a rare disease, large studies have not been performed on the link between NMO and depression. More studies are needed to look at the reasons why this link exists. 5

Doctors do know that moderate to severe depression in NMO is linked to nerve pain and fatigue, and depression among those with NMO is often poorly managed.5

Symptoms of depression

Depression symptoms occur most of the day, nearly every day, for at least 2 weeks:6

  • Persistent sad, anxious, or empty mood
  • Irritability
  • Feeling guilty, worthless, or helpless
  • Loss of interest or pleasure in hobbies or activities that were previously pleasurable
  • Decreased energy
  • Increased fatigue
  • Difficulty concentrating or making decisions
  • Difficulty sleeping or sleeping too much
  • Appetite or weight changes (either too much or not enough)
  • Aches or pains without a clear physical cause
  • Thoughts of death or self-harm

If you are having these feelings, talk with your doctors so they can help you get the care you need.

Grief

Grief is a natural reaction to loss and varies greatly from person to person. Grief is a strong emotion and can be overwhelming. 7

You may experience grief over many types of life situations, such as:7

  • At the time of your NMO diagnosis
  • When thinking about your future
  • Over a lost job or ability to work
  • Over your loss of independence
  • After the death of a loved one

It is important to be aware that grief is a normal and expected emotion. Seek help as you and your loved ones move through NMO together.

Anticipatory grief

Anticipatory grief is grief about a loss that has not happened yet. As someone living with NMO, you may worry about your eventual loss of independence or mental decline. Anticipatory grief can increase anxiety and depression.8

Common signs of anticipatory grief include: 8

  • Sadness
  • Anger or resentment
  • Loneliness
  • Anxiety and depression
  • Guilt
  • Fear
  • Fatigue
  • Desire to talk
  • Emotional numbness
  • Forgetfulness

Anticipatory grief often feels isolating. Try to remember you are not alone, and support is available.8

If you have these symptoms, talk to someone you trust about your feelings. You can also try healthy coping methods such as meditating, deep breathing, exercising, and socializing.8

Memory loss

The direct link between NMO and memory issues (cognitive impairment) is limited. However, those living with NMO name memory problems as a real issue in their lives. Some problems that people report include:9

  • Memory issues
  • Difficulty maintaining attention
  • Issues thinking clearly and quickly
  • Trouble finding words

Studies that have explored memory issues in those with NMO have been limited. Plus, variations to these studies have made them unreliable to report an exact link to NMO. 9

What should I do?

If you think you are having mental health problems or memory loss, talk to your doctor. Your doctor will want to know if these issues are related to NMO itself, your treatment, or something unrelated.

Some of the things your doctor may look at closely to figure out your symptoms might include:10

  • Your current NMO drugs and doses
  • Brain imaging
  • Blood work
  • Current and past medical history

To get the help you need, bring up your concerns with your doctors. This is especially important if you notice your memory loss affects your ability to complete daily activities or if you notice your memory getting worse. 11

Mental health conditions and NMO may go hand-in-hand. At times, it is difficult to know the cause of your mental health problems. Living with a rare disease like NMO can create challenges that make emotional coping difficult. Talking to your doctor about your emotional health will help you get started on the path to treatment.

Living with NMO means you are part of a larger community of people living with a rare disease. You are not alone.

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Written by: Katie Murphy | Last reviewed: September 2021