Saturday, December 14, 2013

Navigating the Social World

The good news is I increased the Imunovir and found 8 capsules of Mimosa Pudica that I started taking a couple days ago. My doctor suggested, after reading my email about the lengthy virus not letting up, to resume Mimosa Pudica. I'm glad I had some left because with the increase in Imunovir and Mimosa Pudica its knocked the virus out and I have more energy.

It's a strange position to be in. To be well enough to want to socialize but not well enough to maintain it. I've talked before about how tricky it is telling people and what to tell them. It's not something I even want to talk about but it becomes necessary at two junctures: 1) when someone asks me what I do for a living and 2) when I have to cancel or turn down invitations to do things.

If I tell people I have Myalgic Encephalomyelitis people respect that. It sounds like a real disease but if I tell them I have Chronic Fatigue Syndrome there's that pregnant pause and then the flat response "oh". "Oh" meaning that disease that's all in your head or that fake illness.  "Oh" meaning your weak, a hypochondriac.

Mostly I tell them I have issues with my immune system and have reduced energy as a result.

But last night I went to a meeting in a new building and had some sort of reaction. As I sat there I suddenly felt like I was going to pass out. I had to start jiggling my legs, shift, then started to put my head between my legs. Eventually I stood up and left the room for awhile. I haven't had that happen in quite some time.

I ended up going to dinner afterwards with 5 other people. They all ordered a meal. I had water. No one said anything. I felt a bit awkward. I still don't know how to explain the money thing. I was hungry and the food they ordered smelled great. I tried playing it off. Someone said "have a couple french fries". I needed to get something in my stomach so I had a couple being careful not to appear overly eager or overly hungry.

I became the invisible person. Everyone there knew I had some sort of chronic illness. I didn't have the energy to keep up the pace of the conversation like I would have had I'd been healthy. I felt more and more uncomfortable as I sat there. They were all going to a Holiday part the next night and talked about who was riding with home. No invitation came my way. I understand why but it hurt a bit nonetheless.

When the conversation turned to gossiping about other people who were "different" I knew the moment I left it the gossip be about me (surprisingly I didn't really care). After I all, I was quiet during the meal, I didn't order food-all I had was water, I have a chronic illness that I can't explain very well. I was different. I also didn't want to participate in the gossip. I've been on the other end of it and its painful.

I politely excused myself and left. As I walked to my car I felt the old familiar worry. Would I start to feel woozy driving? Would I feel like passing out at stoplights again?

I dreaded going home to an isolated bedroom but I needed to lay down. The drive ended up being fine thankfully.

I felt very sad and sick to my stomach with a sense of aloneness as I drove. Am I ever going to make real friends who accept me as I am?  I think they are out there. I just have to hang in there and find my way. It takes energy though. I hope my illness remains stable enough to allow me to make true friends.

I don't take what happened personally so much but more as a commentary on our culture as well as this particular group. They are not my people.

1 comment:

Sue Jackson said...

So sorry you experienced that. I so get it - I have written about it on my blog, too - being with people and yet feeling so isolated and different.

As for explaining, I have developed a pat answer after 12 years: "I have a very debilitating immune system disorder." Sometimes I start there and sometimes I continue with, "...known in the US as Chronic Fatigue Syndrome and in other parts of the world as Myalgic Encephalomyelitis." Either way, the opening line usually opens up a conversation - most people want to know more. I try to give a few details without overwhelming people. I do want understanding but I hate when you say too much and get that pitying look!

Hoping that the Immunovir is helping you - it helps me son and I a lot!


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