Defining Depression in People with Myositis

Adapted from a presentation to the Myositis Support Group at Hospital for Special Surgery

Suzan Fischbein, LMSW
Program Coordinator
Myositis Support Group
Hospital for Special Surgery

It is common to speak of feeling “down” or depressed when dealing with chronic illness. Everyone has bad days and may feel sad, but how is this different from true depression?

Depression is characterized by a prolonged period of feeling sad, crying – often without obvious reason – anxiety, feeling hopeless, and losing interest in activities that were once considered enjoyable. It is understandable, but not inevitable, that a person with a chronic illness may be at a higher risk for depression (15-20%). Illness-related anxiety can also trigger depression.

Consider, then, that people with myositis are coping with some unique factors that might increase the risk for depression:

  • It is a rare disease; those diagnosed have probably never heard of it before.
  • Close friends and family have also not heard of myositis.
  • Even many doctors and healthcare providers are unfamiliar with the disease, and it can be frustrating to feel that you may know more about the illness than your treating providers.
  • It is considered an “invisible“ illness, evoking comments such as, “You don’t look sick,” even while you are feeling weak and tired.
  • People with myositis can experience difficulty in completing tasks of daily living: grooming, bathing, dressing, and meal preparation.
  • Myositis can result in decreased muscle strength. Some people with myositis, particularly those with inclusion body myositis (IBM), are at increased risk of falling. This can come without warning, making it difficult to anticipate and prepare. Because there is decreased upper body strength, getting up can prove especially difficult. Swallowing difficulties may occur, thus making eating meals challenging and sometimes frightening – extra caution must always be exercised.
  • Physical activities that were once enjoyed, such as hiking, water sports, skiing, and gardening, are no longer possible or require great effort to achieve in moderation.
  • Medication, such as prednisone, may lead to depression, anxiety, and mood changes.
  • Caregivers may feel frustrated, tired, and angry themselves, and this can further affect people with myositis.
  • Illness is unpredictable. While you may feel relatively well for a while, this can change and you may then experience a flare. This can result in a need to change your work situation, such as going on disability or choosing to retire. For those who have experienced this, it is common to feel “robbed” of the chance to enjoy this phase of life as they had imagined it.

Treatment Options

It is important to know that depression can be treated and that help is available. It is also important to find treatment that is tailored to your specific needs. There are things to try on your own. In addition, you may want to seek outside professional and/or spiritual help.

Things that you can do yourself include:

  • Maintaining a proper diet.
  • Getting enough sleep.
  • Pacing yourself.
  • Exercising (with the guidance of your doctor).
  • Staying connected with your support systems: in person, by phone, or computer.
  • Finding the right providers.
  • Educating those around you, so that they can be informed about the challenges of living with myositis.

Outside Help

  • When outside help is needed, the following are options that may prove helpful:
  • Seek help through support groups. Our group members often relate that the Myositis Support Group is “the only place they can go where they feel that everyone in the room gets it.” Even when unable to attend the group, members feel connected through the monthly meeting summaries.
  • Consider individual talk therapy (also known as psychotherapy) with a licensed social worker, psychologist, or psychiatrist who may use different methods.
  • A therapist may help through cognitive behavior therapy (CBT). CBT is based on the belief that that the way we think about something plays a role in what we feel and do, and that changing these thought patterns can help.
  • Psychodynamic therapy is usually a more long-term process and explores behavior, feelings, and prior life experiences to help gain an understanding of how your disease may impact current behaviors and relationships.
  • Depression can contribute to conflicts in interpersonal personal relationships. Interpersonal therapy combines techniques of both CBT and talk therapy to focus on developing greater interpersonal skills. (See previous summary by Su Jin Kim, LCSW.)
  • Mindfulness focuses on the mind-body connection through the use of breathing, guided imagery, meditation, yoga, and some elements of CBT to help reduce and replace negative thoughts. (See Monitor on Psychology article by Stacy Lu.)
  • Sometimes, medications such as antidepressants may be needed and can be helpful. Your doctor may refer you to a psychiatrist for an evaluation. It is also possible to get help through the combination of talk therapy and medication.

Where to Get Help

Though people with myositis often see several providers, they may be unaware of how you have been feeling. It is important to keep track of what has been bothering you emotionally, just as you may record your physical symptoms or the effects of medication. You may feel relatively well on the day of your doctor’s visit, but this may not tell the whole story.

Communicate to your providers about how you feel. They may be a good source to find additional help and may recommend the help of support groups, which can help you feel less isolated by meeting others who know how you feel. Social workers, psychologists, and psychiatrists who are experienced in issues of chronic illness also offer help using some of the methods listed above.

Another resource might be your faith or spiritual community, or other groups to which you belong. Don’t be afraid to reach out to trusted friends and family who may not be aware of how you have been feeling. Some may feel that there is a stigma in seeking mental health services and that you will be viewed as “weak.” But it is only by expressing your feelings and seeking help when needed that this stigma begins to be erased. There is no shame in seeking help.

Learn more about the HSS Myositis Support Group, a free support and education group, held monthly for people with myositis and their families and friends


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