A chronic disease like amyloidosis often takes a mental and emotional toll — in addition to the sometimes overwhelming physical symptoms. Because the physical effects of amyloidosis can be all-consuming, you may be experiencing psychological effects that you haven’t had the chance to work through.

One MyAmyloidosisTeam member said, “My primary doctor told me I could write a book about amyloidosis, since I have almost every symptom in the book. I avoid depression like the plague. But, by God’s grace I can keep my mind off it most of the time.”

Read on to learn how amyloidosis can affect your mental health.

What Mental Health Conditions Affect People With Amyloidosis?

Physical and mental health are often closely linked. In a 2016 study of more than 1,200 people with immunoglobulin light-chain (AL) amyloidosis, 37 percent of participants experienced depression and 46.7 percent experienced anxiety.

Here are some ways amyloidosis can affect your mental health.

Depression

People with chronic conditions, including amyloidosis, are more likely to develop symptoms of depression than people who are not chronically ill.

One MyAmyloidosisTeam member said, “I'm 117 days post stem cell transplant and I’m grateful to be in remission. That said, I’m not so happy about the severe depression that has gripped me. There doesn't seem to be much mental health support in the amyloidosis arena.”

“Has anyone else been experiencing depression?” they added. “I don't see anyone talking about it here, but it’s real, and it’s scary when you feel like you are all alone and can’t find your way out.”

Your mental well-being can also affect your physical health. Depression is linked to worse outcomes across a range of chronic medical conditions, increasing the risk of physical disability and death.

This is why it’s important to identify the signs of depression early and get treatment and ongoing support.

Anxiety

Anxiety is also common in people with chronic conditions, including amyloidosis. There’s no cure for amyloidosis, and the disease affects people in different ways. It’s natural to worry about the unknown, including what might happen as a result of this disease.

One MyAmyloidosisTeam member commented, “The mental issues of dealing with amyloidosis have been more difficult than anything physical. The anxiety of wondering when will my liver or kidneys fail, and what happens then, and all sorts of scenarios has impacted me more than almost anything else.”

Another member said, “Amyloidosis changes many aspects of one’s life by injecting fear, uncertainty and lots of soul searching.”

Anxiety can lead to other conditions as well, including insomnia, which is associated with a lower quality of life in people with chronic conditions.

Loneliness and Isolation

Several MyAmyloidosisTeam members commented on the loneliness and isolation that many experience with this condition:

• “Sometimes the depression can get pretty bad and feel so alone.”
• “People think you’re fine and not that sick because you look OK.”
• “Isolation due to people not understanding your illness or perhaps thinking that you prefer to be alone. Also we know that our immunities are compromised, so we avoid crowds and miss out on so many things that used to bring us joy.”

Having a rare condition that most people don’t understand can cause feelings of loneliness. Isolation may be intensified due to compromised immunity that comes with some amyloidosis treatments.

Recognize Your Symptoms

Understanding the symptoms of depression and anxiety can help ensure you get the help you need. If you’re having these types of feelings, talk to your healthcare team or contact a mental health provider for help.

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, appetite, or energy levels
• Difficulty with concentration or decision-making
• Agitated or slow movements
• Suicidal thoughts
• Weight loss or gain

Common symptoms of anxiety can include:

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

Treating Mental Health Benefits Physical Health

Treating mental health conditions has been shown to improve overall health in people with chronic conditions.

You can ask your doctor for mental health referrals, or check with your insurance company to find in-network providers. There are also online sources for finding licensed mental health providers.

Treatment Options

Your healthcare team will make recommendations and help you decide what type of treatment might be best for your situation. You may benefit from a combination of treatments that can help you cope with the stress of a chronic disease.

Options can include:

• Medications, such as antidepressants or anti-anxiety medications
• Talk therapy, such as cognitive behavioral therapy
• Biofeedback, a technique that uses monitoring devices to help you gain control of automatic bodily functions

Healthy Choices

Taking care of your body includes eating a healthy diet and exercising regularly. Ask your healthcare team for exercise recommendations that won’t strain your body too much. Sleep is another important aspect of self-care for people with amyloidosis.

Network of Support

A strong support network can help you deal with the emotional challenges of amyloidosis. A 2020 study found that people with certain chronic conditions reported family as one of their most important resources.

“I check all these boxes [depression and anxiety]. I am on medication plus have a counselor to talk to and discuss the challenges,” one MyAmyloidosisTeam member shared. “The biggest help is my wife, who understands the situation and is totally supportive in addressing these challenges.”

If you need additional support outside of your friends and family, consider joining an amyloidosis support group.

Hobbies and Social Activities

MyAmyloidosisTeam members have noted that engaging in hobbies and social activities — even if they’ve had to adjust them due to amyloidosis — helps manage difficult feelings.

“Prior to Amy, I was a long distance cyclist, but no more,” one member said. “So I ride my e-trike whenever the weather cooperates. Something else to use to avoid depression is to take up hobbies. Now I print/frame photos and am working on investment strategies. Getting totally engrossed in a hobby enables one to forget about Amy.”

Another member shared, “I go to the gym daily and have met friends there. Recently I joined a church. I travel as much as I can.”

Amyloidosis Treatment

It’s essential to continue your treatment regimen for amyloidosis while you treat your mental health condition. One 2020 study found that for older adults with multiple chronic conditions, maintenance behaviors — such as physical activity and sticking to treatment — were the most critical components to combat depression.

Join the Conversation

On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.

Are you experiencing emotional changes since you’ve been diagnosed with amyloidosis? Let others know in the comments below.