During my practical training, I worked to a laboratory of Molecular Neurobiology and Immunology, its research is associated with Myasthenia Gravis (MG). MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. MG occurs in all races, both genders, and at any age, but it is more common in women under 40 and people from 55 to 70 years old to either of sex. The same lab created the Hellenic Myasthenia Gravis Association, which has as aim the assistance of the patients in every level. So, I had the opportunity to meet many patients. From a sociological perspective, most of the patients were disappointed and were not easy for them to accept their illness and continue living with MG. It is very frustrating for them when the doctors inform them that there is no known cure for MG, but only treatments that allow many, but not all, patients with MG to have a normal life. It is worth noting that MG affects each person differently and this requires individualized treatment. I believe that there should be much more research about MG and still much to understand in social context.
I very much share your opinion that more research about MG should be made and that there is still much to understand in the social context. As far as I can remember from my neurology seminars there are several treatment options available though that work quite well in many patients at least for a certain time periode, such as cholinesterase-inhibitors or thymectomy in young patients. However diagnosing MG and probably most other chronic autoimmune diseases can become very stressful and nerve racking for patients as they are confronted with the horrible scenario of a lifelong disease. Beside the physical impairments that affect MG patients, one should also not forget the stigmata a MG patient can become exposed to when symptoms like ptosis or dysarthria occur!
In terms of stigma, I also think that the public can confuse MG with something like Chronic Fatigue Syndrome and treat people similarly. While there is a relatively well defined biomedical model for MG, CFS (which has less severe symptoms) is seen as largely psychological.
So I think, some members of the public could treat MG sufferers as though they have a psychological illness. And overall I think society is less likely to grant 'the sick role' to a person with weakness that has a psychological cause, rather then a medical/chemical cause
But at the end of it all, should people be treated differently whether they have a 'medical' condition or a 'psychological' condition ??
