Navigating Depressed Feelings
with Your Care Team
People with myasthenia gravis (MG) may experience depressed feelings at some time during their MG journey. Learn how to recognize the symptoms and when to talk to your care team.
Living with myasthenia gravis symptoms can be difficult, and for some people, it may weigh on their emotional health.1 How MG affects mental health is different for everyone, but about one third of people living with MG have experienced depression at some point in their journey.2 We interviewed a distinguished neuromuscular physician and a public health expert to provide insight into the symptoms of depression and how to discuss them with your care team.
If you or your loved one experience any signs of depression, it’s important to contact your care team as soon as possible. If you experience thoughts of suicide, please call the National Suicide Prevention Lifeline at 800-273-8255.
James F. Howard, Jr, MD, ran the myasthenia gravis program at UNC Chapel Hill and now directs clinical trials for myasthenia gravis research. He has worked with the MG community for over 45 years.†
Kasley Killam, MPH, is a writer, speaker and consultant, with a focus on loneliness and social health. She has been featured on Myasthenia Gravis Foundation of America’s (MGFA’s) Wellness series: Loneliness.†
What Is Depression?
Depression is a mood disorder that negatively affects the way you think, feel and act. Persistent feelings of sadness for at least two weeks may be a sign of depression. Depression may impact your daily activities.3
For people who live with MG, an important first step in managing depression may be knowing how to recognize its symptoms. Myasthenia gravis symptoms and depression symptoms have some similarities. Like MG, symptoms of depression may range in severity and may differ from person to person and change over time. It’s common to feel sad or anxious after an MG diagnosis, but if symptoms are severe or persistent it’s important to speak to your care team about how to manage it.3-4
- Frequently feeling anxious or sad
- Feelings of hopelessness
- Feelings of guilt, helplessness or worthlessness
- Loss of interest in hobbies
- Fatigue or decreased energy
- Moving or talking more slowly
- Feeling restless
- Difficulty concentrating or making decisions
- Difficulty sleeping or waking
- Weight and appetite changes
- Thoughts of death or suicide
- Aches and pains, headaches or digestive problems with an unknown cause that do not get better
Physical and emotional symptoms often overlap and interact with each other as well, which may make it difficult to know which condition is causing a certain symptom. For example, weight change, fatigue and slowness in moving and talking can also be signs of myasthenia gravis or depression.3-5 Sharing as much information as possible about your symptoms with your care team may help you and your care team better understand what’s causing your symptoms and how to treat them.
Tips for Talking to Your Care Team About Your Mental Health
For many people, talking about emotional health may be difficult, but talking with your care team about depression may play a key role in managing it.
Killam encourages people with MG to talk to their care team about their mental health the same way they do their physical health.
“My hope is to normalize mental health so that it’s like going to the gym: we would take care of our emotional fitness and social fitness just like our physical fitness,” said Killam.
Having a conversation about mental health with your doctor may help normalize it. There isn't shame in experiencing depression; it's just a matter of needing support.Kasley Killam, MPH
Loneliness and Social Health Author
If you are a caregiver or supporter of someone living with MG, you can play a role in this conversation too. For example, you may notice changes in your loved one’s behavior, such as them spending more time watching TV and less time doing the things they used to enjoy.
According to Dr. Howard, sharing this information with your loved one’s care team may provide clues to their mental and emotional health. “That may not come out early and so we appreciate this kind of input,” he said.
Having an open dialogue with your care team is key, and if you think you or someone you love might be experiencing depression, make sure you speak to a healthcare provider as soon as possible.
“If you feel more comfortable talking to someone outside of your care team that’s okay too,” said Dr. Howard. He recommends finding a primary confidant that is outside of your family, whether that is your primary care physician, a trained therapist or a leader in the community, so that you can express feelings without guilt. Make sure that if your confidant is someone outside of your care team you tell your doctor so that they are aware of this relationship and may seek permission to speak with this individual. Contact your care team or a trained therapist as soon as possible if you are experiencing suicidal thoughts.
Managing and Treating Depression
Dr. Howard emphasized the importance of the relationship between a patient and their doctor when diagnosing depression in people living with MG.
“First and foremost, it’s the relationship. We have quality of life indicators that we use—some of us use them routinely in our practice with MG patients—that help give us some clues. But I think, more importantly, it is the relationship one has that allows us to pick up on the subtleties of change.”
Your doctor may use an assessment to measure for depression, such as the Hamilton Depression Rating Scale (HAM-D). This commonly used questionnaire helps evaluate symptoms of depression; however, having an open relationship with your care team may help to identify if something is amiss.6
Dr. Howard is also realistic when he tells his patients that MG is treatable and that improving quality of life is possible after diagnosis, but may take time. Feeling sad, upset, frightened or angry are all natural reactions to a diagnosis that you have no control over; however, setting up a treatment plan and finding ways to pursue your hobbies may help bring enjoyment back into your life with MG.
“I always try to find out what their enjoyments are, what their hobbies are. If it’s physically possible I have them continue them. Because it’s a great outlet. For some it’s simply going out and taking a walk,” said Dr. Howard.
Additionally, Killam stresses that people with MG shouldn’t wait until their symptoms of depression become chronic or debilitating to seek help. Instead, she considers it healthy to seek professional support for mental health at any time. She also suggested joining an advocacy or support group as one potential way to help ease the burden of depression. For more information, go to https://www.mg-united.com/mission/.
National Suicide Prevention Lifeline: 800-273-8255
For depression and mental health:
https://www.nami.org/help National Alliance on Mental Illness (NAMI)
https://www.crisistextline.org/help-for-depression/(Crisis Text Line)
- Chu H, et al. Front Psychiatry. 2019;10(481):1.
- Law C, et al. Cureus. 2020;12(7):e9184.
- NIMH. Depression. Accessed January 2021. https://www.nimh.nih.gov/health/topics/depression/index.shtml.
- Gilhus NE, et al. Lancet Neurol. 2015;14(10):1023-1036.
- Hehir MK, et al. Neurol Clin. 2018;36(2):253-260.
- Hamilton M. J Neurol Neurosurg Psychiat. 1960;23:56-62.
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†Paid spokesperson of argenx