“I feel so alone.” This statement is heard from so many after a medical diagnosis of any kind, but certainly felt after a diagnosis of a rare disease like vasculitis. This article will focus on the patient who feels alone after receiving this type of diagnosis because in the case of a rare disease there are not many people to talk to who truly understand it. Of great importance is the impact this type of diagnosis has on caregivers such as parents, spouses, children, etc. In my next article I will address their role in dealing with a loved one’s diagnosis, prognosis, and care.
I am hosting a golf tournament in the Chicagoland area to raise awareness and funds for research and education for the Vasculitis Foundation. In our marketing of this event, a young woman called me after hearing of this on a social media website. She was diagnosed with Takayasu’s arteritis last year and while speaking with her by phone one of the statements she made was how alone she felt not knowing anyone who has what she has, and further not really having the resources to seek out professional support. She was overwhelmed to find out through our conversation that there are at least a handful of people within 20 miles of her who have some form of vasculitis. Immediately she felt more connected and less alone.
Her story, like so many who are diagnosed with illness, emphasizes the typical emotional response one experiences after this type of diagnosis. Beyond feeling lonely it is not uncommon for the patient to feel sad, angry, lost, uncertain and like there are more questions than answers…more gray than black and white. These feelings we all experience however can be altered if we the patient take some initiative. Whether vasculitis, cancer, or other medical conditions, there are foundations and/or organizations one can affiliate with subsequent to diagnosis. These organizations, like the VF, can put one in touch with others suffering from similar illness. Beyond that, they offer information and education which yields knowledge. Knowledge becomes power, and when a patient becomes empowered, the feelings of being alone begin to diminish.
As a psychologist, I of course encourage my patients to talk. One does not need to seek out professional help necessarily to communicate. As long as they find someone to talk with, be it a peer, a spouse, a family member, or even a support group it is the release of what is inside that begins the process of healing. What I find so interesting is when people share their story with others they often hear something in return which helps them feel a little better about their own condition. When one self-discloses, a concept in psychology in which one reveals information about oneself, relationships can be formed. It is these relationships that can help with feelings of being alone or isolated after a diagnosis.
If one is unfortunate enough to have a diagnosis that leads to feelings of loneliness, my recommendation is to think of it as an opportunity to find others that you would have otherwise never crossed paths with. Make it a point to figure out why certain people come into your life and with that, you will begin to feel more connected and less alone.
Dr. Jeffrey Fishbein is a licensed clinical psychologist and a partner in the clinical practice of Drs. Gault, Fishbein, and Associates and also as a sport psychologist for the Chicago White Sox professional baseball organization. He has been diagnosed with non-systemic microvasculitis with multiple neuropathies. You can read his full story here. He writes a regular column addressing different aspects of mental health and psychological well-being for members of the vasculitis community.