Living with desmoid tumors can take a toll on your self-esteem. The condition can cause anxiety about body image and how others may perceive you. Desmoid tumors can also impact your ability to work, perform daily tasks, fulfill family responsibilities, and do the things you enjoy, all of which can severely affect your mental health and how you feel about yourself.

Desmoid tumors — also known as aggressive fibromatosis — are noncancerous growths that develop in connective tissue (soft tissue). Desmoid tumors usually occur in the arms, legs, and abdomen and are related to a type of cancer known as soft tissue sarcoma. These soft tissue tumors can be aggressive and grow quickly in some cases. However, they don’t spread to other parts of the body like cancers do.

Oncology research shows that people with this rare disease experience emotional distress that can impact self-esteem at twice the rate of those with some types of malignant (spreading) cancers.

If you’re living with desmoid tumors, it’s important to understand how this health condition may affect your self-esteem. Fortunately, there are steps you can take to feel better about yourself and improve your quality of life.

The Impact of Desmoid Tumors on Body Image

Symptoms of desmoid tumors can change how your body looks and feels. Common symptoms of desmoid tumors include pain, swelling, a growing lump, trouble moving the legs or arms, and nausea and vomiting. These symptoms can cause self-consciousness and lower self-esteem.

Other body issues that may occur with desmoid tumors and affect self-esteem include:

• Changes in skin
• Balance problems
• Fatigue
• Problems with sexual function

In very severe cases of desmoid tumors, there is a risk of serious complications and disfigurement, including amputation or stoma. A stoma is a surgical procedure that creates an opening in the abdomen for eliminating waste. Stoma is rare but can occur in cases of intra-abdominal desmoid tumors that cause serious intestinal damage.

Treating desmoid tumors can also impact the body and self-esteem. Scars from surgery and side effects from treatments like chemotherapy — including hair loss — can change your appearance and negatively impact self-esteem. Many people with desmoid tumors experience negative body image due to visible scars and lumps, especially women with desmoid tumors.

Self-Esteem and Daily Life With Desmoid Tumors

Self-esteem can also take a hit when desmoid tumors make daily life difficult. If desmoid tumors grow large, they can cause severe pain and disability, affecting your ability to care for children, hold a job, or participate in sports or other physical activities.

Self-worth, a key component of self-esteem, can be negatively impacted when you cannot perform daily tasks as well as you’d like. Feeling valuable and capable is essential to self-worth and self-esteem, and when desmoid tumors interfere with your responsibilities, your sense of self may suffer.

Family Responsibilities and Self-Esteem

While there is little research specifically on parenting with desmoid tumors, a study of mothers with cancer showed that a serious disease can affect a parent’s self-concept and increase fears about their child’s well-being. When a parent is ill, children can also develop emotional and behavioral problems.

If you’re a parent with desmoid tumors, you may face both practical and emotional challenges that affect your self-esteem, making you feel inadequate in caring for your family.

Self-Esteem and Employment

A review of research studies found that 26 percent of people with desmoid tumors stop working, and 10 percent work only part time. Unemployment is linked to low self-esteem, particularly in men, who may also experience depression related to job loss, according to The Spanish Journal of Psychology. The inability to work can be especially distressing when living with a long-term illness like desmoid tumors.

Social Isolation and Self-Esteem

When desmoid tumors interrupt everyday activities, other aspects of life can also be affected. An inability or limited ability to participate in recreational or social activities can also affect your self-esteem. People with desmoid tumors have reported relationship difficulties and social isolation, which can impact mental health. Feeling self-conscious may increase social isolation.

Improving Self-Esteem With Desmoid Tumors

If you’re living with desmoid tumors, you can take steps to improve your self-esteem and mental well-being. Here are some things you can do.

Ask for Emotional Support

Low self-esteem can stir a range of emotions that can lead to self-criticism and self-doubt. It’s important to have an outlet for your feelings. Talk to your health care team about getting a referral to a counselor who can help you express your emotions and give you tools and techniques for coping with stress and other difficult emotions in healthy ways. If low self-esteem is affecting your family, couples or family counseling may be beneficial.

Keeping a diary or journal can also help you process difficult feelings.

Stay Connected to Friends and Family

Spending quality time with loved ones can help you feel less isolated and boost your self-esteem. Let those close to you know what kinds of activities you feel comfortable with, even if it’s just sharing a cup of tea. Enjoying lighthearted moments with friends can lift your mood.

It’s also important to let friends and family members know how they can help you. Sometimes people want to help but don’t know how. If falling behind on daily tasks is hurting your self-esteem, inform your loved ones about particular tasks they can assist with to make things easier for you.

Avoid Alcohol and Substance Abuse

Alcohol and substances may temporarily numb negative feelings, but they are unhealthy coping mechanisms. Substance use can worsen negative feelings and negatively impact your overall health.

Join a Support Group

An in-person or online support group, like MyDesmoidTumorTeam, can connect you with others who understand what you’re going through. Knowing you’re not alone and talking to others who understand your feelings can be reassuring and empowering.

Take Time for Self-Care

Self-care can include reading a book, listening to music, enjoying a long bath, or spending time in nature. Treating yourself well is crucial for feeling good about yourself.

Other aspects of self-care include staying hydrated, eating a healthy diet, and getting regular physical activity, all of which benefit both mind and body. Your doctor can give you a referral to a registered dietitian or a physical therapist if you need help with healthy eating or exercise tailored to your needs.

Getting enough sleep is also essential. If you have trouble sleeping, talk to your doctor about ways to improve it.

Mindfulness training can reduce stress and enhance self-awareness and self-care for people with chronic diseases. This form of meditation helps calm, clear, and relax the mind. This can help you break negative thought patterns and lead to a more positive mindset about living with desmoid tumors.

Maintain Your Treatment Plan

Sticking to your treatment plan for desmoid tumors and getting appropriate follow-up care can improve both your condition and self-esteem. If you’re not satisfied with your current treatment plan, be sure to discuss other treatment options with your oncologist.

Find Your Team

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.

Has your self-esteem been affected by desmoid tumors? What tips do you have for improving self-esteem while living with desmoid tumors? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.