For most non-medics, understanding the complicated information given during a diagnosis like Myasthenia Gravis means being abandoned in an unfamiliar world. If you’re lucky, you’re given brochures or steered towards helpful online guides by medical staff. But like anything new, to begin with it’s completely overwhelming. I remember looking again and again at information on MG during those first few weeks and months desperate to understand. I couldn’t speak the language of this new world.
Given time to acclimatise, you start to learn the key terms (many of which are here in my A-Z) and a way of making sense of it. To this day the way I describe it is similar to how I have from early on: ‘my immune system has gone rogue and is attacking itself. It particularly likes the weak spot between muscles and nerves’.
If you’re anything like me, you dont feel like you fully understand the condition and you’re not sure you want to. But what you do try to understand is what MG means to, and for, you. Because objective knowledge about the condition makes it incredibly hard to keep positive through the lows – whereas knowing your own version allows hope to remain. Everyone is different but my advice for anyone desperate to understand MG would be try to get to know it on a personal level.