A rare disease diagnosis can impact you and your family’s quality of life and mental health. In the wake of your diagnosis, you may feel like no one understands what you’re going through. These feelings may be met with more uncertainty due to a lack of research or evidence in using medication to treat the disease.
Every situation is entirely different, so coping with your rare disease diagnosis is as unique as your genome (the entire set of DNA instructions found in a cell).
You are of immense value and deserve the best treatment and resources. You deserve to feel better and live fully. Here are a few ways to cope with a rare disease diagnosis.
Try Talk Therapy
Emotional strain can cause significant pain when it comes to rare diseases. Chronic pain, often present with rare diseases, is theorized as a biopsychosocial phenomenon that involves both physical and emotional processes. Research suggests that pain and affect are related between individuals. For example, pain can lead to negative emotions through dysfunctional mental and behavioral patterns, and that can negatively perpetuate pain.
Talk therapy can help you cope with a rare disease diagnosis, whether in a group or individual setting. Look for a therapist or groups who specializes in chronic health conditions or rare diseases. Even if the therapist does not have experience with your exact diagnosis and symptoms, they can likely relate to what you’re going through.
Here are some ways to find therapists or group therapy.
- Search for medical or health issues on pages like Psychology Today or social media.
- Ask your hospital social worker for referrals.
- Call your local United Way. They often have access to support or may be able to connect you with an organization that can help.
Prioritize Health and Well-Being
Leading a healthy lifestyle is essential for everyone, especially those with a rare disease diagnosis. Prioritize your health and well-being by practicing healthy habits.
- Eat a whole food, nutrient-dense diet.
- Prioritize sleep. Experts suggest seven to nine hours per night for adults. Adequate sleep can help offset rare disease symptoms like mental health challenges, fatigue, or chronic pain.
- Reduce stress. Coping with a rare disease diagnosis is likely one of the most stressful things you’ve overcome. Find ways to minimize stress, like meditation, prayer, yoga, or deep breathing.
Find Community
Even if you can’t find a community with your exact diagnosis, others with a rare disease diagnosis or even chronic health conditions will likely understand or be able to relate to what you’re going through.
Online communities—like those on Facebook or Reddit—offer a space to share experiences and find empathy. They are also great for finding resources, such as physicians, therapists, or nonprofit organizations who may offer monetary support.
Participate in a Clinical Study
Participating in a clinical study is not just about your health, it's about the future of rare disease treatments—inspiring progress and hope. Clinical studies offer several benefits for patients with a rare disease diagnosis.
- Gain access to potential new treatment or medical device upgrades.
- Receive high-quality medical care, including more regular tests and monitoring.
- Take an active role in your health care.
- Contribute to science and help others.
- Find community through fellow participants.
PatientWing connects interested volunteers like you to the researchers and doctors who are running clinical studies. Discover current clinical studies.
