Desmoid tumors are complex and the information on this page is a general overview and not intended as medical advice for any individual problem, or as a diagnosis, treatment plan, or recommendation for a particular course of action, and this information should not be used as a substitute for professional medical advice and services. Please do not delay in seeking professional medical advice regarding your individual circumstances.
The impact of a desmoid diagnosis can reach beyond just the physical challenges. Some patients experience mental and emotional hurdles as well. Our mental health series dives into the unique experience of a desmoid tumor patient and provides mental health education, tools, and strategies for coping with the emotional challenges of this diagnosis.
Watch Ashley Williams, a Licensed Clinical Social Worker (LCSW) and desmoid tumor patient, as she presents “Dealing with Desmoids: Mental Health Tools for the Desmoid Patient”, a virtual educational series hosted by the DTRF.
Please note: This video series was created in 2023. Ashley Williams, LCSW is the Co-Founder and Clinical Director of The Desmoid Project. Connect directly with The Desmoid Project team to join patient support groups, learn more about upcoming patient retreats, and explore other mental health resources.
Upcoming Session
Tuesday, April 25th, 2023 at 7pm ET
“Survivor’s Guilt & Toxic Positivity”
After diagnosis, a desmoid tumor patient’s friends, family and co-workers may not know how to respond. People may respond with toxic positivity, the tendency to minimize the difficult parts of a patients’ experience by encouraging a solely positive outlook.
Patients may also experience an unexpected side effect of diagnosis: “survivor guilt”. With a variety of treatments and treatment responses, one can often feel guilt over the perceptions of faring better than fellow patients in the cancer and rare diseases communities.
In this session, we will seek to understand the impact of other’s responses on a patient’s mental health – and then, identify strategies in dealing with these responses. We will also discuss the impact of survivor guilt and strategies to overcome.
