One of the less visible aspects of autoimmune diseases is the emotional and psychological toll the diseases can take on patients. The chronic nature of the diseases, lack of cures, and the unpredictable nature of disease progression and treatment effectiveness often culminate and lead to depression, anxiety, and a sense of loneliness.
Many patients with autoimmune diseases experience emotional trauma, the
“emotional and physical reactions that are experienced when one is confronted with an overwhelming external event, such as a disease diagnosis.”
For many, the journey to obtain a diagnosis is itself fraught with struggles. To seek out physicians while being sick, to be referred from one specialist to another, to wait for weeks to months for appointments, and then to be dismissed by some physicians who either do not believe us or tell us it's all in our head, this ordeal is enough to drive any mentally-healthy person to anxiety and depression.
Apart from the diagnostic journey, it is often difficult to accept that our bodies will no longer function as it once did and that certain career paths or life paths may be closed off for us. The struggle with a sense of identity is one we often hear from our registrants. It is also very difficult for family members and friends to fully grasp the extent of our disease and its impact on our lives. While many are supportive in the beginning, empathy burnout is not uncommon among family and loved ones.
If you would like to share your story, your diagnostic journey or struggles, please message us through the contact form. At the Autoimmune Registry, we believe spreading awareness and amplifying patient voices is a key part of improving the diagnosis and treatment of autoimmune diseases. To try our video platform, visit here to start making and sharing videos about your experience.
To support the Autoimmune Registry, join our registry or share our information with others. Donations are also greatly appreciated!
