Q: I feel very alone with my lupus. Because my lupus is not noticeable, people don’t know what I am going through. I need support but I don’t want to burden others with my problems. What should I do?
A: Like you, most lupus patients look healthy. Because your condition is invisible and others can’t see your pain or fatigue, you are unlikely to receive support and empathy without sharing your experience. Feeling unsupported can lead to isolation, loneliness, discouragement and even depression. I suggest that you make it your purpose to build a support network of at least 5 people who will believe you, who will honor your experience and your symptoms and who will care about your suffering. Look to your most caring friends and family members and provide them with factual information on lupus. Take them with you to your doctor’s appointments. The support you will receive will give you strength to face challenges. Talking with others will release your burden and your loneliness. Revealing your vulnerability will lead to deeper personal relationships. Consider joining a lupus support group where people already “get it.” Take your select friends with you on occasion. Be sure to allocate time and energy to your relationships. It’s easy to pull away when you are in pain but emotional support is vital to your well being.