If you’ve had a blood clot and find yourself coping with depression, anxiety, or post-traumatic stress disorder (PTSD), know that you aren’t alone. A study published in January 2021 in Research and Practice in Thrombosis and Haemostasis found that around half the patients interviewed experienced ongoing psychological distress related to their pulmonary embolism (PE). And 3 percent were diagnosed with PTSD. The researchers also found that very few had access to mental health services. Many resources are geared specifically for people coping with a blood clot diagnosis and what that means for them. Since getting help can be easier said than done, here are some places to start. National Blood Clot Alliance (USA) The National Blood Clot Alliance provides credible information on blood clot topics including the management of VTE. The alliance also has an online support community that can be accessed from anywhere in the country, where people can select from specific topics including anxiety, depression, and trauma. Thrombosis Canada This Canadian organization regularly updates an extensive archive of credible blood clot information and resources both in English and French that can be accessed by anyone in the world. Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD)
The CDC is another excellent online resource accessible to people all over the world. The government agency keeps up-to-date information and videos on topics such as pregnancy and venous thromboembolism (VTE), and blood clots and travel. American Heart Association (AHA) The AHA publishes evergreen information about blood clots as well as articles that break down the latest research discoveries. Blood Clot Recovery Network (BCRN) The BCRN has created a community for blood clot patients and their friends and families. They have an easy-to-navigate site (“Recently Diagnosed? Start Here”), with info on topics such as women’s health. Thrombosis UK This is another organization that provides free, credible information about blood clots that can be accessed from all over the world — including a webinar about managing the psychological effects of blood clots. Thrombosis Ireland Thrombosis Ireland’s free, online, expert-vetted resources include easy-to-understand information for anyone who is preparing for a hospital stay, which is the catalyst for 60 percent of all blood clots in Ireland.

Mental Health Resources

Even if mental health doesn’t come up during your appointment, your doctor is always a good person to talk to about mental health care, and your doctor’s office may even employ mental health specialists or social workers who can connect you with a psychologist specializing in medical trauma. You can also check your government health website for resources in your area, or take a look at these other sources of help. Substance Abuse and Mental Health Services Administration (SAMHSA) If you live in the United States, chances are you’ve heard of SAMHSA. The government organization doesn’t directly provide therapy, but it does provide 24-hour assistance for Americans who need mental health care. Using the hotline, you can connect with someone who will refer you to the correct resources depending on factors such as your insurance status and the state you live in. The National Suicide Prevention Lifeline (800-273-TALK) connects people with crisis centers throughout the country. National Health Service (NHS) The NHS has a similar service that connects people living in England with mental health helplines and professionals in their area. You have to provide your age and where you live in the country, and the website will generate a list of 24-hour hotlines you can call. Black Mental Health Alliance (BMHA) BHMA focuses on connecting Black Americans with culturally conscious mental health care, including referrals to Black, Indigenous, and People of Color (BIPOC) therapists throughout the United States. The organization addresses mental health in the Black community as well as stigma about seeking help. Melanin & Mental Health Melanin & Mental Health has a database of U.S.-based BIPOC mental health experts that’s searchable by race and ethnicity, license type, health concern, insurance, treatment modalities, age specialty, language, and appointment type (virtual or in-person). They also have an extensive list of resources that BIPOC communities around the world can access for free. Psychology Today’s Find a Therapist Psychology today has compiled a huge list of mental health specialists that’s searchable by location, insurance, issues, sexuality, gender, age, language, faith, type of therapy, and ethnicity. Mental Health America (MHA) This is another group that houses a deep database of U.S.-based mental health specialists. The organization also has a peer support certification program for those experienced in peer support.

Online Peer Support Groups

While you shouldn’t rely on peer support groups for medical advice, online groups can be a great place to connect with other people who understand what you’re going through, especially when in-person support groups aren’t accessible. There are general deep vein thrombosis (DVT) and pulmonary embolism (PE) groups as well as some that focus on specific topics, including pregnancy and post-clot fitness. DVT/PE/Anticoagulants/Post Clot PTSD/Recovery and Fitness Support This group was started by Todd Robertson, who has had multiple experiences with clotting and wants to normalize people talking about mental health as much as physical health. Facebook serves as its platform for people to share their stories about post-clot mental health, medication, and getting back into an exercise routine after being treated for a blood clot. Pulmonary Embolism Support Group This Facebook group is the largest on the list, with nearly 12,000 members. It’s open to caregivers and family members of people who have had a PE as well as those diagnosed. People typically post their own stories about their experiences with recovery and the medical system, and a lot of posts come from people who are new to PE. Lovenox Ladies Lovenox Ladies is a safe space for people who are pregnant or trying to conceive after being diagnosed with a clotting disorder. According to the Centers for Disease Control and Prevention (CDC), pregnant women are five times more likely to have a blood clot than women who are not pregnant, and this risk extends to three months after giving birth. Again, you should work with your doctor to determine a care plan before or during pregnancy and shouldn’t rely on peer support groups for medical advice or diagnoses. DVT/ PE/ PTS/ RVT ~Thrombosis: Blood Clots Support Group This is another more general group that’s been active on Facebook since 2015 and includes nearly 8,000 people from all over the world. Embolism to Exercise A newer, PE-specific group, it’s open to PE survivors who are looking for support in restarting a fitness routine after being diagnosed with a PE.