What is the most frustrating or difficult aspect of living with a rare disease?

The hardest thing about living with this condition is never really knowing your body.  It like being trapped in a prison in a foreign country

Not many doctors have a good handle as a whole treatment for Scleroderma, some just say it, others just assume it is like Lupus, but knowing how it effects each organ over time and what to do is evasive. So I must see many doctors, and working with VA on the issues is like pulling teeth from a running mule. Then there is the loss of assets and lively hood from a rare disease. You end up on SS and VA funds and can't work. Mentally and emotionally drained by those who you can only hope knows at least what you do. But Scleroderma experts are far and few between and require travel to meet. But the dear in the Headlights look I get when I mention Scleroderma is frustrating, and I can see why more help is not available or cure has not been found. 

Why do we involve specialists for muscular dystrophy. I get it somewhat but we are not interested in growth hormones or MRI. Just want to get him tested for muscular dystrophy.

Living with a rare disease can be incredibly frustrating and challenging, especially due to the lack of awareness, limited treatment options, and difficulty in finding specialized medical professionals. Connecting with support groups and patient advocacy organizations can provide valuable resources, a sense of community, and information about the latest research and treatments for rare diseases, helping individuals navigate their unique challenges. Seeking emotional support from loved ones and mental health professionals can also help cope with the psychological impact of living with a rare disease.