In 1998 when I had my first episode of optical neuritis, the brand new husband was beside me. He heard the ‘maybe, one day, this will be MS’ message, but has had the attitude that we will deal with it, together, if and when.
But with a diagnosis in January 2013, who to tell, when and how. We live in a city, but it feels like a small town. Once news gets out, anyone could find out. But DH mum deserves to know, as do my parents.
DH mum came to dinner. When kids were outside, DH broke that we had been through an interesting couple of weeks. I had lost sight, we had tests, and we have a diagnosis which is good because now we know. And, we aren’t going to tell the kids. Her reaction was shock, but supportive. Since then she has done the same level of research as we have. And of course she has stories of someone who had it years ago and it destroyed their life.
My parents live interstate. I rang and insisted mum get dad on the extension so I could tell them something together.
i have had to support them. Be strong for them. Explain that it isn’t a death sentence, in fact nothing really has changed other than a shadow in my life has become real. From other blogs, I was a little prepared, but it is hard. In a way I want to go crying to mummy and Abel her to make the hurty go away. But I am having to be strong and positive. For them. Is this the way it will always be? Brave face? What is hard, is when she rang for my child’s birthday, she wanted to know if I had another attack, was I feeling okay. Trying to explain that I have a good version, and it could be months or years till the next relapse is hard.
Part of me now thinks they both see me as a label. Defective daughter in law and disabled daughter.