One of the hardest things about having lupus is that people who have it generally don’t look sick. When they park in a handicap parking space, they may feel self-conscious. Many lupus patients get be glared at by people who wonder why seemingly healthy people are taking parking places away from people who need them. The general public has a hard time accepting that people who look so healthy can actually be in a tremendous amount of pain. They can’t imagine that the lupus patient taking a handicap parking space may be so overwhelmed by exhaustion that it’s hard for them to walk across the parking lot.
The appearance of being healthy can also be very frustrating for lupus patients. They don’t want to look the way they feel, which is often pretty awful. They do, however, wish that they could feel as healthy as they look. Having a healthy appearance can cause lupus patients to feel as if they should be doing more than they are, regardless of how they feel.
These issues and others demonstrate why lupus patients, and those with similar autoimmune diseases, can benefit from spending time with one another, either in person or remotely. Patients who would like to connect with other lupus sufferers can go to LupusConnect (inspire.com) to find an online lupus support community. The Lupus Research Alliance has a community forum at Lupus Community – Lupus Research Another social media option is the Facebook group Lupus Warriors located at (8) Lupus Warriors | Facebook.
For those who need an educational resource capable of helping patients understand their disease. The Lupus Foundation of America has a online patient education specialists as well as education resources the help patients understand and learn to cope with their condition. They are located at www.lupus.org.