When I have visitors, they do not get an accurate representation of my life with M.E.
This is because:
a) I am ‘well enough’ to have a visitor. (The stimulus that comes with being in the presence of another human being, the following of a conversation, potential smells from perfume, etc – one has to be ‘well enough’ for all of that.)
b) I get excited! So I become more animated than is normal (or sensible!) at being in close contact with a real life human being!
c) Adrenaline kicks in and fools me into thinking I’m actually doing okay.
d) I have no desire to show the whole world and his aunt my reality face-to-face. I shouldn’t have to. Seeing shouldn’t have to be believing. Of course I share quite honestly and openly behind the safety of a screen. But I am under no obligation to do this in Real Life all of the time.
e) I want an escape; a chance to chat with my family or friends that doesn’t centre around my restrictions. So, often I will appear more chatty than normal. (This is partly because I’m really don’t want my visitor to get a chance to ask me how I am.)
f) When I am in bed, I feel incredibly vulnerable. I don’t want people coming to sit on the end of my bed. Whoever you are! So I mask the vulnerability will false bravado. I put on a performance and I cannot help it.
Any others that I’ve forgotten that you’d add?
It’s been pointed out to me several times that it’s not ideal that this happens. As a result of visitors seeing me “better than [they] imagined [I’d] be” those around me have a harder time convincing said visitors that I’m a lot sicker than I seem. I care less about how people might misinterpret things now, but I understand that for my husband and my parents it can be hard to constantly face the “Well she seemed okay when I saw her!” from those a little further removed. You saw me for exactly 5 minutes, but okay!
Visitors aren’t really a thing at the moment. I’m still shielding and really not well enough for contact or conversation. Just something I’ve been thinking about over the years.
'M.E. myself and I' by Anna 