Caring for Someone With a Rare Disease

Caregiving for a loved one with a rare disease is both rewarding and challenging. Much time, energy, and resources can go into caregiving for rare diseases. A loved one may go through years of testing and referrals before doctors reach a diagnosis.^1,2

Caregivers shoulder the burden of supporting a loved one through times of:^1,2

• Disease flares
• Tiredness
• Financial strain

Making time for self-care is vital while also caring for a loved one.^1,2

Education and advocacy

Education and advocacy are essential to caregiving. To be a good advocate, you must learn about the disease. Often, caregivers may know more about the disease than the doctor. It can feel frustrating to be both an advocate and an educator. When doctors do not know or are misinformed, caregivers need to share their expertise.^1,2

Advocacy means speaking up on behalf of your loved one:^1,2

• When there is a new treatment that may benefit them, bring it up.
• Ask questions.
• Make suggestions.

Attending appointments with your loved one gives the doctor a second point of view. You have valuable insights to share from your experience in being with your loved one regularly.^1,2

Caregiving

Being a caregiver requires a lot of patience and compassion. You are helping your loved one succeed with their treatment plan. You see both their good days and their bad days. You may need to decide when to call the doctor or seek emergency treatment.^1-3

Sometimes, loved ones may get angry about living with a rare disease. They may take their frustration out on you. It may be hard not to take this personally. But, knowing your loved one, you must learn when to push and when to listen. Encourage them, and celebrate small victories. Offer comfort and words of compassion when they experience setbacks.^1-3

Financial burden

A rare disease can affect the financial health of a family. The costs can be steep for:^1,2

• Diagnosis
• Treatments
• Doctor visits
• In-home medical aids
• Medical assistant devices

Caregivers often find it necessary to work fewer hours or scale back careers to care for a loved one. Missing work to care for a loved one or to attend doctor visits, or passing on a promotion, can impact financial earnings.^1,2

Finances can be a major source of stress for caregivers. Balancing the medical needs of their loved ones with financial security can take a toll.^1,2

Social isolation

Caregivers often struggle with social isolation. Caring for a loved one takes a lot of time and effort. There is often little time left to engage socially outside the home. A caregiver’s entire world can become just work and caring for a loved one. Because of this, caregiving can take a toll on mental health. Caregivers often lack social outlets or emotional support for carrying the weight of a loved one’s rare disease.^1,2

Social media offers caregivers the ability to connect with others who are in similar positions. While not the same as in-person socializing, it can create a vital bond. Knowing you are not alone in bearing the stress of caregiving matters.^1,2

Self-care

Self-care is vital when serving as a caregiver. It is essential to take breaks to support your mental health. Self-care can be small actions, such as:^1-3

• Taking half an hour to read a book
• Going for a walk
• Taking a bath

Self-care can also be more extended moments, such as:^1-3

• Going out for coffee with a friend
• Talking with a therapist
• Getting a massage
• Scheduling a weekend away

Finding what helps you feel refreshed can help support you through long-term caregiving.^1-3

Resources

A few resources from the National Organization for Rare Disorders (NORD) offer support to caregivers. They provide financial and educational support.⁴

• NORD Caregiver Respite – Financial assistance is awarded on a first-come, first-serve basis. Applicants must meet some financial guidelines.
• NORD Resource Center – A YouTube channel that provides free webinars and videos on topics for living with a rare disease
• NORD Rare Disease Database – A database with information on more than 1,200 different rare diseases