Whether you’re newly diagnosed or further along in your diagnosis journey, click to learn more:
- The Other Side of You: Mental Health for Beginners
- Living with Risk
- Living with Marfan Syndrome: What are the psychological effects after surgery?
- What is the emotional impact of the diagnosis on the family?
Common Mental Health Challenges
It’s natural for every person, regardless of whether they have a diagnosis, to experience anxiety, sadness, anger, grief, and other emotions. These emotions may be more prevalent, depending on what’s going on in your life. Situations, such as receiving a diagnosis, anticipating an upcoming surgery or job interview, or sudden loss of a loved one, can make these feelings much stronger. When these emotions last longer than several weeks and make it difficult to function in the usual way, it may be time to seek help from a trained professional. You do not need to suffer in silence!
People with chronic conditions have a higher risk for clinical anxiety, depression and related issues, so it’s important to be aware of some of the common mental health issues and how they might affect you. You don’t have to just “live with it.” Help is available.
Anxiety, Fears & Worry
Anxiety is a natural emotion that’s a reaction to environmental cues, most often to stress. Anxiety has features that are both psychological and physical. Anxiety can include fearful or intrusive thoughts, shortness of breath or stomach aches, among other symptoms. Whether it’s mild or severe, there are a lot of ways to help keep anxiety from taking over your life.
Depression & Sadness
Depression is a common mood disorder that affects how you feel, think and act (or handle daily activities, such as working, eating and sleeping). Everyone experiences feelings of sadness, but when it lasts for more than two weeks and is accompanied by other symptoms, you may be suffering from clinical depression. There are lots of ways to treat depression, so find one that works best for you. You WILL feel better!
Anger is a natural emotion. It is common for people with chronic conditions to feel angry about their diagnosis and to feel a sense of loss of control. Sometimes there are unhealthy ways of dealing with anger, whether exploding with rage or keeping the anger bottled up inside. If you find yourself regularly taking your anger out on your loved ones or yourself, there are tools to help cope so anger doesn’t rule your life.
Grief & Loss
Grief is a natural response to loss. Coping with the loss of someone or something you love can be overwhelming and impact you emotionally, mentally, and physically. Grieving is an individual process, with no right or wrong way to grieve. Everyone experiences loss and grieves in their own way, on their own time. There are ways to help you cope with the loss of your loved one so that you don’t become stuck in the thoughts and feelings that prevent you from healing.
Trauma, Crisis & PTSD
It is natural to feel afraid during and after a traumatic experience. Trauma can include anything from a surgery or series of medical problems, to a sudden loss of a friend or home, and the trauma leads to both an emotional and physiological reaction. When the symptoms of trauma last long after the actual event, it may be time to seek help.
Body Image, Self-Image & Self-Esteem
Body image, self-image and self-esteem are all intertwined. It is not uncommon for individuals with chronic conditions to have a more negative body image and lower self-esteem. There are a variety of factors that affect how people may feel and perceive themselves, including age and stage of life, the severity of how the condition impacts them, the nature of the condition as visible or invisible, their relationships and support system, vulnerability to mental illness and general outlook on life. If you are among those whose body image and self-esteem are negatively impacted by your diagnosis, these resources may help.
- Beyond the Selfie: Body Image and Life with a Connective Tissue Condition
- Let’s Talk About YOU: Self-Care and Empowerment Strategies
- Does Marfan Syndrome Define You?
Mental health providers have helped me sort out my fears and wants in ways even close family and friends could not. They gave me tools and ideas for managing my stress and often gave me encouragement. I know I’ve lived a longer, better, deeper life because I learned to work on my mental health as diligently as I did my physical health.
After my daughter Cassie was diagnosed at birth with Marfan syndrome, our lives became a whirlwind. I ignored my own mental health to the detriment of not only me but my whole family. I needed to make sure I had a place to talk about my worries and fears, as well as our triumphs, and I’ve made sure to see my therapist ever since (on and off for years). Making sure that everyone in my family is getting the support they need is one of the best ways I know for us to take care of ourselves.
After many years, I came to realize that treating the physiological challenges posed by Marfan syndrome is not the same as confronting the inevitable psychological burden of the disease. Don’t go it alone. Seeking out support and/or professional help can be transformative in ways you cannot imagine.
Mental health is an ongoing journey, one that can shape you into a beautiful person or one that can harm you. Being able to recognize what you need to shine light in your life is a strength that will guide you far. Connect with others, share, and know that you are never alone.
Finding Help & Support
There’s no need to suffer alone! Everyone needs extra support at some times in their life, and there’s nothing wrong with asking for help. There are many different types of help and support available. Try what works for you.
Mental Health with Marfan Syndrome (in a Post-2020 World)
When you have a lifelong condition like Marfan syndrome, your daily experience looks different from many — and different from your own experience, even a day or a week ago.
Connecting with others is very important when it comes to your mental health. Staying connected can help you feel less isolated and alone, and connecting with others who have a similar diagnosis or life experience can help you feel validated and accepted. Connect with others who truly “get it” and understand you.
Here are just a few ways to get connected:
Mental Health Resources
There are numerous mental health-related resources available, many of which are free on-line. Just as with other on-line content, it’s important to find trusted sources and content that speaks to you and your beliefs. Here are just a few to get you started in your search. Please note, these are not an endorsement of the organizations, content, or other information contained within the sites.