I think that title is self explanatory for those of us living with Lyme. The whole process, no matter where we are with this illness, people just don't get it. From the beginning, if you knew when you were bit or had no idea it's such a mind fuck. Most likely you experienced gaslighting from doctors, maybe your family, friends, spouse? It affects us all differently, and I think that's the part that those who aren't living with this just can't wrap their heads around.
Lyme hits us sometimes from all angles; neurological, GI, psychological, muscles, joints, whatever. It kind of feels like being a puppet and someone else has the control. At the beginning I would push through and thought all of these piling symptoms were my own fault. Then I got to the point where I knew I was sick and needed help. Now I'm getting the help and I'm worried it either won't help completely, or it will and I'll relapse. It's as if there is no safe zone. Sometimes I really just try to live in the moment and think of how far I've come. Then I have days where omfg I can just stare at a wall all day.
It's really been interesting the way people react when they hear I am not working still, which I thought it wouldn't be much of a big deal being that many people are currently still unemployed. They rush to offer me employment when I didn't ask for that. I am taking my time since I have the opportunity to do so, to heal and make sure my health does not go back to square one. Even when I tell them I am having surgery in a few weeks and then starting another protocol treatment it's as if what I said went right over their heads. I imagine to them they may be thinking, "well she doesn't look sick, so I'm assuming it's not that serious" or they have absolutely no idea wtf I'm talking about and try to skate by the topic. Either way it's really annoying.
The reason I am holding off on work is to see how this protocol makes me feel. Herxing is not fun and herxing while working is definitely not fun. I remember those days and I would rather not relive them.
I hate to always compare but it's like if I said I was doing chemo (even oral chemo) would people still offer me a job or would I actually be taken seriously?... Okay we all know that's a rhetorical question because we know the answer. But for real, if you don't really have a full grasp of what someone is going through why not just ask? I don't know maybe I'm crazy, maybe it's Lyme brain, maybe it's Maybelline.
Okay I think that's all of my little rant for today. Just know while it may seem as if literally nobody understands this community has shown me at least we have each other.
Sending spoons to each and everyone of you!!