I was just thinking-why is it so important for us to be "normal" and what is "normal" any how?

Every neurologist I met over the years promised me (initially) that with his treatment I will have significant improvement and be able to lead a normal life.

Even my current neurologist keeps on telling me that he is optimistic that with time I will do much better. (although he is cautious not to promise too much and when I ask him what he means by "better" he diplomatically changes the subject).

When neurologists keep on saying that with MG you can lead a normal life they convey a very optimistic message (which is great) which gives much hope, but also a very grim message which is- Life is not worth living if you can't live a normal life.

I am just thinking what if the neurologist who took care of me in the early days of my illness said the truth- "You have severe MG, I hope that with this treatment you will do much better and be able to resume your normal life, but there is also the possibility that this will not happen and we will have to think together of what to do, so that you will be able to lead a reasonably productive life."

Instead of- "we are going to fight this together. Every MG patient today fully recovers from this illness sooner or later. There is no reason why you should not be able to do everything".

What if my physicians over the years did everything to treat me, give me proper supportive care and help me and my family deal with the reality instead of what they did (which was the exact opposite).

Many neurologists (and other physicians) think that if they can't make the patient's illness disappear, they have failed. Many patients think that dealing with an illness means fighting against it and not "succumbing" to it.

Society has double standards regarding disability. Both physicians and patients are effected by them.

I never wanted to be "normal". I never wanted to be like everybody else. I wanted to be unique. I wanted to have my own thoughts and beliefs, philosophy of life. I wanted to be me, not what others expected me to be.

Once I became ill, I had to change my desires. I had to want to be "normal". But was is "normal"? Do I want to be like that neurologist who told me he too is tired of making rounds each day? Do I want to be like the neurologist who thought his conference was more important than a very ill patient? Do I want to be like the pulmonologist who didn't even bother to take out the memory card out of my respirator to see that what he thought was "impossible" actually happened and was registered on it?

The message many physician covey to their patients is that you either recover or there is nothing I can do for you. Very few physicians see it as their role to help their patients adjust to their illness.
In reality full recovery with no sequalae is rare. Modern medicine has turned many fatal diseases into a chronic illness. Modern medicine has saved many lives at the price of significant morbidity. Physicians are trained to diagnose, treat and cure. They are not trained in the art of healing.

I do not know. Possibly there are patients with MG who fully recover from their illness and lead a completely normal life with no significant medication side-effects. I do know that there are many who do not. Many who have to learn and teach those around them how to live with this illness. Many who are constantly given the illusion that this is not so.

It is very nice when you are initially diagnosed with MG to hear that it is the best autoimmune disease, that it easy to treat, that the vast majority of the patients lead a completely normal life.

It is an enormous burden on you and those around you to keep on hearing it, once it is obviously clear that at least for you it is not so.
It makes it nearly impossible for you and for them to adjust to the reality of your life. It creates unrealistic expectations. It significantly curtails your ability to receive proper supportive care.

It's like telling someone standing in the middle of a battlefield, with bullets going over his head that this is not a battlefield, but a nice meadow and those are not bullets but pretty butterflies.

How can you (and those around you) adjust to something you are constantly told doesn't even exist?