Strategies for Coping With a Rare Disease

Last updated: October 2022

When you are diagnosed with a rare disease, you might feel overwhelmed about what to expect. Because few people have your disease, there may be a lack of information and treatment options. Routine doctor’s office visits might be longer for you, and you might have to go more often. You may also face more hospital visits than people with more common conditions.1,2

Here are some strategies to help navigate the stress of having a rare disease.

Educate yourself

Becoming an expert in your condition is vital since you may often see doctors and other professionals who do not know much, or anything, about your rare disease.

Learning as much as you can may help you feel empowered. Research your family history. Knowing if someone else in your family has or had the same condition and how they managed it might be useful. This is particularly important if genetic testing tells you your illness is inherited.

Arm yourself with knowledge. Work with your doctor to find credible resources about your disease. You may want to ask about research studies, clinical trials, and patient advocacy groups.1

Take care of yourself

On average, it takes 6 to 8 years for a person with a rare disease to get an accurate diagnosis. Once you finally have some answers, you may have mixed emotions. You may be relieved to finally have an answer. But receiving the news that you have a rare disease can still be difficult. Taking some simple steps to keep your physical and mental health in check may make it easier to cope:2-4

  • Make your physical health a priority. Staying on top of vaccinations can be a simple way to take charge of your health when you have a rare disease. Scheduling regular healthcare screenings is also important.
  • Take care of your mental health: Physical and mental well-being go hand-in-hand.
  • Depression and anxiety are both common reactions, so you may want to find a group with shared experiences to exchange thoughts and feelings. Or find a therapist who specializes in helping people with chronic illnesses. A psychiatrist can prescribe medicines that will help you better manage any depression, mood swings, or anxiety. If your company provides one, you may be able to take advantage of an employee assistance program.
  • Focus on what you can control: When you have a rare disease, you may feel a loss of control over some aspects of your life. Depending on your disease, eating nutritious food, exercising, and getting enough sleep are things you can control. Carving out time for yourself to decompress and relax can also be a useful strategy.
  • Ask your healthcare team about financial support. When you are facing a rare disease, you may have more out-of-pocket medical expenses. Or you might have to take a leave of absence from work. Consider asking your doctor about any resources available that can help you with your finances during this time.

Helping your family adjust

Receiving the news that you have a rare disease may not only be hard on you. It also may be difficult for your family members. Just as you need time and space to process, so will they.3

Your routines may need to change, and your family members may have issues adapting. You may want to consider maintaining some normalcy, such as taking time for a game or date night. Maintaining fun routine activities might be helpful for everyone, including you.3

Work with your doctor

Your doctor will play a major role in helping you and your family navigate your condition. It will be important to find a doctor you are comfortable with and one you can trust.1

Ask your doctor to help you with symptom management. Most rare diseases do not have a treatment approved by the FDA (US Food and Drug Administration). But you may be able to manage the symptoms that impact your quality of life the most. Your doctor can also work with you on determining the risks and benefits of certain procedures and treatments.1,4

Be your own best advocate

Receiving the news that you have a rare disease can be devastating. Learning to advocate for yourself and implementing some simple strategies may make the journey a bit more manageable. And remember, your disease may be rare, but there are 30 million people in the United States with a rare condition. Join this rare community to find strength in numbers.4

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