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 