Connective Issues Spring 2022

LIVING WITH RISK By Ennis Rook Bashe

Some people believe that all problems can be whisked away with positive thinking. For people with a connective tissue condition, it’s important to recognize that putting on a happy face won’t magically restore your health. However, you can ask yourself, “How helpful is this thought? How helpful is this fear? Is it helping me to make good choices or is it just bringing me down?” • Take care of yourself. Many habits are important to both mental and physical health, such as getting rest, eating fruits and vegetables, and going outside. • Be open to seeking professional help. Sometimes issues are too big to handle alone, and talking about things with a professional can increase your quality of life. Children and Teens Ms. MountainJohnson also touched on the unique risk management needs of children and teens with Marfan,

When you feel like your body is a ticking time bomb, how do you defuse your anxiety and fi nd peace of mind? Living with the possibility of a health emergency can have a negative impact on your mental health. This issue was the focus of a recent Foundation webinar that featured Karen MountainJohnson, MA, LPCC, a clinical supervisor and mental health professional at CARE Counseling in Minneapolis, MN. In addition to her professional expertise, Ms. MountainJohnson has VEDS; her two sons have VEDS as well. Having an Emotional Response is Normal Ms. MountainJohnson wants people in the Marfan syndrome and related conditions community to know that having an emotional response to the di ffi culties of a chronic illness is completely normal. Although there is limited research available, preliminary studies suggest that a high percentage of individuals with a connective tissue condition also present with mental health concerns including anxiety, depression, and/or post-traumatic stress disorder. Identifying the Role of Risk Ms. MountainJohnson explained that awareness of risk is valuable because it promotes safety and empowers decision making. However, it’s also possible to be overly aware and concerned to the point that you have increased anxiety and fear and avoid being active, decreasing your quality of life and missing out on new experiences. “The ideal balance involves avoiding high-risk activities while enjoying low-to-moderate risk activities and taking care of both your physical and emotional wellness,” said Ms. MountainJohnson. “I hope people in the community will be able to attend to risk in a way that’s meaningful and empowering without having it take over their lives.” Tips for Improving Your Mental Health Ms. MountainJohnson provided several tips for our community. • Find support and validation . This is important in many parts of your life, from friends and family to medical practitioners. Finding a team of people who will help you advocate for yourself can go a long way. • Educate yourself. Learn about the risks for your condition and how can you be prepared. Then decide what amount of risk you are ok with. • Practice acceptance and grounding. Think about what can you fi nd to feel positively about in the present moment. • Recognize and challenge unhelpful thoughts.

Loeys-Dietz, and VEDS. She emphasized providing developmentally appropriate information to young people and answering their questions as honestly as possible without scaring them. Let them know that being aware of risk helps with making good, safe choices, and help them fi nd low-to moderate risk physical activities that they can enjoy long term. A consideration she is also aware of from her own journey with VEDS is the importance

“No matter your age, your feelings are valid, and you’re not alone.”

of building positive healthcare experiences. Children may have negative healthcare experiences that create feelings of fear and helplessness. Ms. MountainJohnson stresses the importance of allowing children and teens the opportunity to talk with doctors and nurses who are there to help. This will increase trust and long-term resilience. She also recommends practicing calming and relaxation skills and creating connections with others with the same diagnosis. “It’s important for people to know that everyone’s feelings are di ff erent,” said Ms. MountainJohnson. “Both children and adults can have a wide range of reactions to living with risk. No matter your age, your feelings are valid, and you’re not alone.” To watch the webinar featuring Ms. MountainJohnson, search Living with Risk on The Marfan Foundation's YouTube channel.

Ennis Rook Bashe is a graduate student in their fi nal year at New York University’s Silver School of Social Work who is currently interning with The Marfan Foundation. They live with hypermobile Ehlers-Danlos syndrome and a very loud cat.

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Spring 2022