Reacting to your diagnosis

Whether you have spent years chasing a Marfan diagnosis, or it crept up on you by surprise, you will need time to adjust to and accept that you have a life-altering illness. You will inevitably work through the stages of grief (denial, anger, bargaining, depression, and acceptance), perhaps numerous times over the course of weeks, months, or your entire life.

You may find that you immediately need to tell the whole world about it, or you may find that you need to spend some time thinking it through by yourself. You may be thrilled and relieved to have a diagnosis, or depressed and horrified about what it could mean for your life and your family. When you do start talking about your diagnosis, you may have trouble finding the right words, because the language of Marfan and the issues involved in Marfan may be very new to you.

Most Marfan patients and others living with any kind of chronic illness experience a tremendous sense of betrayal... "How could my body do this to me?" "How could my parents do this to me?" "How could my genes do this to me?" Some Marfan patients will go through periods of feeling like freaks or outcasts.

Give yourself time to work through the emotions, and turn to your support network (friends, relatives, church, pets, psychiatrists, etc.) as much as necessary. Within the Marfan community, there are numerous support resources available: local support groups and telephone contacts provided through the National Marfan Foundation, the Marfan Life email discussion group, the Marfan Life forum, and numerous online Marfan communities.

How you choose to respond to Marfan is entirely up to you. Below are some books, websites, etc. that have helped members of the marfan community come to terms with their marfan status.

Resources

Wells, Susan M. A Delicate Balance: Living Successfully with Chronic Illness. HarperCollins, July 2000.

Selak, Joy and Overman, Steven. You Don't LOOK Sick; Living Well with Invisible Chronic Illness.

ChronicBabe.com - especially see "Waving goodbye to our old selves, and embracing our new existence"

Butyoudontlooksick.com

Information and referral services from the National Marfan Foundation