Living with autoimmune hemolytic anemia (AIHA) requires a strong focus on maintaining your physical health. As a result, it can be challenging to take stock of how AIHA may be affecting you in other ways, including mentally and emotionally. People living with a chronic condition sometimes contend with stigma; that is, being seen — or feeling like you’re being seen — in a negative light because of your medical condition.

The unfortunate reality is that anyone facing a chronic (long-term) disease has an increased risk of developing a mental health condition, which can further reduce their overall quality of life. That’s why people with AIHA should try to focus on mental wellness whenever possible.

“I spent months in a depressed state because my diagnosis seemed like a dead end,” one myAIHAteam member wrote. “I feel like l have the opportunity to help others like me. Do your research. You have to be your own advocate for your health.”

Another member said, “Feeling exhausted already, and I have no motivation to get anything done.” A fellow member replied, “Stay strong!”

Read on to learn about effective ways to face the mental health challenges that come with life amid a rare disease like AIHA.

Why Are Mental Health Issues Common With Rare Diseases?

A variety of factors may contribute to an increased risk of developing mental health conditions among individuals with rare and chronic diseases.

In a 2022 survey of people with rare diseases (or those who care for children with rare diseases), participants noted experiencing high levels of depression, anxiety, and stigma. This finding was particularly common among those who waited years for an accurate diagnosis, faced high health care costs, or had to travel long distances for care.

An analysis by Mental Health America found that individuals with chronic health conditions may be more likely to have a mental health condition due to factors such as:

• Isolation from spending so much time at health care facilities, or because of decreased mobility
• Inflammation from stress
• Worry about the stress of managing the condition
• Hormonal and chemical changes

Others may experience feelings of anxiety or depression because they aren’t getting appropriate medical care. One study found that people who felt stigmatized by health care workers had a decreased quality of life. This was caused in part because they accessed health care services less frequently than those who didn’t internalize stigma or anticipate a negative response.

Left untreated, anxiety and depression can worsen the effects of other health conditions. For instance, sleep issues, including insomnia and extreme oversleeping, are associated with a lower health-related quality of life in people who have chronic conditions.

Because AIHA is a rare disease that requires ongoing care, it’s no surprise that mental health issues may affect people with this condition. One study focused on individuals with cold agglutinin disease (a type of AIHA) found that they were 1.7 times more likely to take prescription medications for depression and anxiety than those without the condition.

Coping With Mental Health Issues

Although it may feel as though you need to spend all of your time focusing on your AIHA treatment plan and coping with physical symptoms, it’s also important to take the time to treat any mental health conditions or troubling feelings.

Treating anxiety and depression may also help you more easily manage your AIHA. Research indicates that individuals living with depression along with another illness often feel symptoms of both conditions more strongly. By working with a mental health provider and your AIHA specialist, you can manage both conditions to improve your overall quality of life.

In some cases, your AIHA symptoms may have come on so slowly that you didn’t realize you were experiencing mental health challenges as part of your daily life. That’s why it’s important to recognize anxiety and depression symptoms when they occur.

Symptoms of depression may include:

• Sadness
• Feelings of worthlessness or hopelessness
• Guilt
• Loss of interest in things or people you typically enjoy
• Changes in sleep, nutrition, or energy levels
• Difficulty with concentration or cognition
• Agitated or slow movements
• Suicidal thoughts

Common symptoms of anxiety can include:

• Nervousness or agitation
• Feeling a sense of upcoming doom
• Heart palpitations, rapid breathing, or sweating
• Trouble sleeping
• Gastrointestinal issues
• Trouble focusing

If you experience these feelings, talk to your health care team or contact a mental health care professional for help. They can help you find interventions to help you cope, which may include cognitive behavioral therapy, medication, mindfulness training, lifestyle adjustments, or other methods.

You may not be able to eliminate all of the risk factors for developing anxiety and depression from your life while you’re living with AIHA, but you can work on those you can control. Stressful life circumstances, a history of trauma, and a lack of social support may be out of your control. But health experts have identified changes you can make to reduce anxiety and depression, including maintaining a healthy diet, getting enough physical activity, and not smoking.

Seek a Supportive Community

Health experts say that 66 percent of individuals with rare diseases don’t feel like they get the support they need from medical providers. This lack of support can take its toll on your mental state. Finding a community with other people living with the same condition as you can help.

If you’re looking for a support group where you can talk about life with AIHA, ask your health care provider if they know of any resources. You may also consider exploring some of the following:

• The National Organization for Rare Disorders offers an educational support program and a caregiver respite program.
• You may be able to find Facebook groups or other online communities where people discuss life with AIHA.
• The social network myAIHAteam allows you to connect directly with other people who are living with AIHA.
• The nonprofit wAIHA Warriors hosts an annual meeting where people can meet to talk about life with warm autoimmune hemolytic anemia, the most common type of AIHA.

No matter which type of support you find, it’s important to seek help if you ever feel like your mental well-being or physical health is declining. Remember that seeking support isn’t a sign of weakness. Recognizing when you need help and taking steps to prioritize your health takes strength and courage. Whether it’s through talking to a trusted friend or family member, seeking professional counseling, or joining a support group, you don’t have to face AIHA alone.

Connecting With Others

AIHA is a rare condition, but you’re not alone. On myAIHAteam, people with AIHA and their loved ones come together to ask questions, give advice, and share their stories with others who understand life with this condition.

Have you ever felt anxiety or depression? Share your experience in the comments below, or start a conversation by posting on myAIHAteam.