Human beings are wired for connection and community. However, when you’re living with a rare, chronic illness like desmoid tumors, you might feel like no one understands your experience. This might make you want to withdraw and isolate yourself.

While managing the physical pain of desmoid tumors is important, mental health matters too. Social isolation can worsen feelings of anxiety and depression. It can also increase your risk of premature death, heart disease, stroke, and dementia. If you feel socially isolated because of your desmoid tumor diagnosis, it’s essential to ask for help.

Desmoid Tumors and Social Isolation

In a small focus group study at The Royal Marsden Hospital in London, people living with desmoid tumors said they felt alone and socially behind their peers. One participant shared, “Socializing has become difficult due to the pain and discomfort.” Another said, “Last year, I became quite shut in. I missed out on a ton of social occasions because I felt so disturbed by the diagnosis.” A third participant noted, “My friends are a lot more confident than me. They speak better than me and have a lot more experience with social scenarios.”

In a different study, researchers found that people with desmoid tumors felt more emotional distress than participants with malignant sarcoma. The study also looked at where the desmoid tumors were located — abdominal wall, mesentery (intra-abdominal desmoid tumors), and extremities (extra-abdominal desmoid tumors). People with abdominal wall desmoid tumors reported the highest levels of severe depression and anxiety, nearly twice as often as the sarcoma group.

If you or a loved one has desmoid tumors, you know that living with a rare disease isn’t easy. Understanding your feelings and finding ways to cope can help you live a full life after such a life-changing diagnosis.

What Causes Social Isolation With Desmoid Tumors?

Many factors can lead to social isolation after a desmoid tumor diagnosis. Here are a few reasons that might sound familiar. Whatever your reasons for feeling isolated or wanting to withdraw, know that help is available. Keep reading for suggestions at the end of the article.

People May Not Understand Your Diagnosis

In the United States, where there are more than 337 million people, fewer than 1,500 people are diagnosed with desmoid tumors each year. Because it is such a rare disease, it is likely that your friends, family, neighbors, classmates, or coworkers haven’t even heard of it, let alone know someone else living with it. You might find yourself getting tired of trying to explain your diagnosis over and over.

Usually, when someone is diagnosed with cancer, everyone rallies around them for support. People with desmoid tumors may receive similar attention, at least at first. But once others learn that desmoid tumors aren’t malignant — meaning they aren’t cancerous and don’t spread (metastasize) to other parts of the body — your social circle might mistakenly think your condition isn’t serious and that you’ll be OK. What they may not understand is that desmoid tumors can be locally aggressive, with pain being the most common symptom, and that your health-related quality of life may have significantly decreased since your diagnosis.

Feeling misunderstood and unsupported while seeking treatment options from a health care provider familiar with desmoid tumors can be frustrating, lonely, and isolating.

The Future Can Feel Uncertain

Your health care provider may suggest active surveillance instead of starting treatment right away. Active surveillance, also known as watchful waiting, means monitoring tumors closely to see if they grow or shrink over time. While this strategy can help avoid unnecessary treatment, it can also lead to stress and anxiety.

If you are living with desmoid tumors, it can be tough to engage with family, friends, and hobbies when you’re worried about your tumors progressing or new ones forming. You may feel unable to plan for the future while waiting for scan results that could change your life overnight. Unless someone else is living with a rare and chronic disease, they may not fully understand the fear and anxiety you face every day.

Treatment Can Be Demanding

Although desmoid tumors are not cancerous, they are best treated by oncologists who specialize in treating sarcomas, rare cancers that form in connective tissue. Finding someone who specializes in both oncology and desmoid tumors can take time. It may also involve traveling if there are no specialists in your area. Having to travel for treatment might mean missing special events like birthdays and graduations. This can lead to feeling more and more isolated from your social circle over time.

Treatment for desmoid tumors can lead to unpleasant side effects. Depending on the tumor type and location, an oncologist treating desmoid tumors may recommend therapies similar to those used for the treatment of cancer, like chemotherapy or targeted therapies. These treatments can cause fatigue, hair loss, nausea, diarrhea, loss of appetite, and other side effects that might make you feel more like staying home than going out and being social.

Overcoming the Challenges

If everyone living with desmoid tumors could gather in one place, it would be clear that you are not alone. You would see people on your left and right who understand what you are going through, even if their journeys differ from yours. While it might be difficult to bring everyone together physically, you can find that same sense of community online.

Here are a few ways to do that:

• Introduce yourself — Join MyDesmoidTumorTeam and participate in conversations.
• Get involved — Join the Desmoid Tumor Research Foundation Patient Advocacy Committee.
• Explore support — Check out groups and retreat opportunities through The Desmoid Project.
• Participate in Rare Disease Day — Join events online or in person with the National Organization for Rare Disorders (NORD).
• Search for support groups — Look for desmoid tumor and rare disease support groups on Facebook.

In addition to connecting with others who can relate to your experience, consider reaching out to a licensed therapist or counselor. Mental health and physical health go hand in hand, and both greatly affect your quality of life and well-being. The Desmoid Tumor Research Foundation also offers a library of mental health resources, including on-demand videos.

While your loved ones may not fully understand the challenges of living with desmoid tumors, they care about you and want to help. Be open and specific about your needs. Here are some examples:

• Do you want someone to attend your next doctor’s appointment with you?
• Would it comfort you to have someone sitting by your side while you wait for scan results?
• If your side effects are keeping you from attending a social event, would it help if your family included you over Zoom or FaceTime?

Consider what kind of support you need, communicate your needs clearly, and let your loved ones help.

Lastly, instead of trying to explain your desmoid tumor diagnosis over and over again, get creative! If you like to write, consider putting together an explanation that you can email or print out for people who want to understand your condition better. If you enjoy taking photos or making videos, or have a loved one who does, consider making a short film about desmoid tumors and how your diagnosis impacts your life.

Living with a rare disease isn’t easy, but help and support are available. For more resources, talk to your oncologist or a mental health specialist.

Talk With Others Who Understand

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.

Have you had to cancel plans or miss out on special events due to your diagnosis? Have you experienced social isolation? Do you have tips for others who are struggling? Share your experience in the comments below, or start a conversation by posting on your Activities page.