Mental Health in Rare Disease: Taking Care of Your Mind Is Taking Care of Your Body

May 10, 2023

May is Mental Health Awareness Month. Taking care of your mental health is key, whether you are the patient or caregiver.

Anxiety, stress and depression can all manifest as physical symptoms, including elevated blood pressure, forgetting to take medications, or insomnia, among many other ailments. If you are a caregiver, many in the rare disease community use the oxygen mask analogy: “Should an emergency situation occur, you need to put your own oxygen mask on first, before attempting to help those around you.” You hear it on airplanes all the time, and it may seem selfish at the time, but think of it this way – if you’re not okay, then you can’t take care of your loved one. And you can’t be their eyes and ears at doctors appointments or for other caregivers.

Those in the rare disease community may experience a variety of mental health issues, ranging from anxiety and stress to depression. These are the most common mental health issues someone in the rare disease community may experience:

Anxiety is “an emotion characterized by apprehension and somatic symptoms of tension in which an individual anticipates impending danger, catastrophe, or misfortune” according to APA (American Psychological Association). A rare diagnosis may lead to fears, worries and racing thoughts, and also physical symptoms like a racing heartbeat, sweating, or panic attacks. It is natural to have some fears after a diagnosis, or starting a new treatment because of the unknown. The anxiety begins when your thoughts are consumed with the questions that you don’t have control or answers to. It helps to talk to others about what you are experiencing to eliminate questions that they may have, and also to make sure you surround yourself with people that will help you overcome the anxiety. Therapies such as meditation, breathing exercises, and cognitive behavioral therapy are common methods to manage anxiety.
Depression can range from occasional low moods to a clinical depression for long periods of time. Feelings of sadness, loneliness, apathy, isolation, anger, and irritability are common in depression, as are physical changes like loss of appetite or increased appetite, lack of interest in normally enjoyable activities, and even thoughts of suicide. In the rare community, loneliness, despair, and isolation may be especially heightened and intensify the depression. Therapy, and if possible, medication, may help to alleviate the depression.

Stress affects everyone, and can cause a fight or flight reaction in the mind and body, and can make symptoms experienced in any disease worse. In those diagnosed with rare disease, stress exacerbating symptoms can be even more dangerous given the difficulties in treatment or managing symptoms. Keys to managing stress include not keeping things to yourself, seeking outlets for expressing emotions, and self-care.

Survivor’s guilt is often understood as something a car crash victim or a veteran may experience after coming back from a war. How could it affect someone who is diagnosed with a rare disease? Even when treatment is successful and the symptoms of a rare disease subside, those diagnosed with a rare disease may experience survivor’s guilt as they are thriving, and there are those who are still experiencing symptoms of their condition, or did not survive. Caregivers may experience survivor’s guilt as well, as they form bonds with other caregivers, and see the challenges that they continue to experience.

What Should You Do?

The one thing that is the same in the rare community as it is within the rare community is how to tackle mental health problems. The key is identifying that mental health conditions exist, and then finding ways to remedy those feelings, whether that it may be through therapy, support groups, medications, and talking to fellow patients and caregivers.

Managing mental health is an important part of the treatment process for someone diagnosed with a rare disease. Treatments have been proven to be more effective when the mind is in a good place, and spirits are lifted. The science is unknown, but the results are undeniable.

Rare Disease-Specific Resources

We Are Brave Together Is Passionate About the Mental Health of Caregivers

Mental health and self care resources for rare patients and caregivers

Nikki McIntosh, Founder of Rare Mamas, shared her thoughts on caregiver, self-care, and mental health.

RARE Mom & Advocate BIllie Short shares: Creating Care for the Caregiver Five Minutes at a Time

Summit Sessions about Mental Health

Several sessions at previous Patient Advocacy Summits addresses mental health and self-care. Here are the links to the session videos:

Preventing Caregiver Burnout: 2022 Patient Advocacy Summit

Grieving as a Community: 2022 Patient Advocacy Summit

Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression

Building a Coping Toolbox as a Rare Disease Parent or Caregiver

Beyond the “Impossible Thing” – Breaking Barriers and Redefining Strength

Understanding the Emotional Health of Rare Disease Patients

General resources

If you are struggling with your mental health, there are a number of resources that can help you with next steps. Your primary care physician can help you with next steps, including deciding if medication, therapy, or a combination of the two will be helpful.
Use Psychology Today’s Therapy Directory to search for mental health professionals in your area.

If you, or someone you know is in crisis, please seek help immediately. Some resources for 24-hour crisis services:

The National Suicide Prevention Lifeline’s 24 hour toll-free crisis hotline, 1.800.273.TALK (1.800.273.8255) can put you into contact with your local crisis center that can tell you where to seek immediate help in your area.

Text “MHA” to 741-741 to speak with a trained crisis counselor at Crisis Text Line.

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