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  • Areeg Sweis

The Association Between Mental Health and Rare Disease

The issues you take on as a rare disease patient can take a toll on your mental health. Dealing with a rare disease, which often has no treatment or cure, can often trigger a mental illness in many cases. Continue reading to learn more about how your mental health can be affected by your rare disease diagnosis.


A person diagnosed with a rare disease may experience emotional turmoil that can form into a mental illness. For other patients, they might have already been diagnosed with a mental illness before their rare disease was discovered. A new medical condition can often exasperate the mental illness symptoms, which is typical for some rare disease patients dealing with a mental health issue. Some symptoms can include increased irritability, anxiety, bouts of depression, suicidal thoughts, and many more.


So, what can trigger mental illness for rare disease patients?


Possible triggers for mental illness symptoms can include initial diagnosis, the potential severity of the disease, change in daily routine, lack of awareness, and improper treatment. These factors are additional challenges a rare disease patient and their families may face when hearing the diagnosis for the first time.


A newly diagnosed rare disease patient may initially have a stress response to their medical condition, which can result in more severe mental and physical health problems. Here are some of the possible physical symptoms that can derive from a mental illness:

  • Loss of energy or fatigue

  • Sleeping issues

  • Lack of interest in day-to-day activities

  • Loss or increase in appetite

  • Difficulty concentrating

  • Headaches

  • Stomachaches

  • Pain not associated with the rare disease diagnosis

You or your caretaker (if you have one) must be aware of the changes in your mental or physical health. The earlier you notice the symptoms, the quicker you can seek healthcare services.


If you notice that you're dealing with a possible mental illness concerning your rare disease diagnosis, here are some options you can choose to seek support:


  • Support groups: There are several patient support groups, both online and in-person, for rare disease patients and their families to join. It’s a great way to meet other people living a similar lifestyle to yours while receiving resources, recommendations, and advice as well.


  • Communities: Like the patient support groups, you can also find many rare disease communities that can provide you with the guidance and support needed to manage your medical condition. Many of these communities can be found online on various social media platforms and in person.


  • Therapy: Seeking therapy is one of the best ways to manage the emotional toll your rare disease may take on you. While there aren't any licensed therapists specializing in rare diseases, they can still aid in helping you control your mental illness symptoms caused by your condition.




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