I was just wondering how many people on here tell people outside of their family and close friends that they have Lyme Disease. Do you tell your co workers, or your acquaintances that you have Lyme?
or do you just tell them you have something else like fibromyalgia just to avoid getting into all the technicalities and confusing stuff, since so many people just don't understand.
Do you obviously look sick so people tend to ask whats wrong with you and if you are sick? Have you ever had someone think you were on drugs or withdrawing from drugs because you looked so exhausted, sickly and worn?
Drug abuse is so sadly common now a days it's not the unlikely for random people to think it.
I don't really tell people outside of my friends and family. I take HCL capsules when I eat and I just tell people at work who see me take it that it's for digestion.
I don't get into why i take it. i just say i'm PMSing if I feel overly toxic. I just really can't get into it around most people. It's far too in-depth
what about you guys????
**edited for easier reading**
[ 11-18-2015, 11:39 PM: Message edited by: Lymetoo ]
Posted by Keebler (Member # 12673) on :
- The thing is to tell your co workers can put your job, future, livelihood at risk.
But, you are right, it's a quandary when the body is not like other bodies out & about. You've come up with a few ways around that but I can tell you sort of need something more solid that will fly, make sense enough but not signal seriousness too intense.
I think to say fibromyalgia is even too much for work. People talk and it can label you as not up for the job, or a future with the company.
Allergies? Sensitive to ______ (the planet Earth)? -
Posted by Lymetoo (Member # 743) on :
I don't say much. I don't keep it a secret .. but my issues are no longer with active Lyme. It's the aftermath.
I look pretty danged healthy.
Posted by Robin123 (Member # 9197) on :
True, what Lymetoo is saying - a lot of us look healthy and that is confusing to people - they want to SEE our disability!
I often remind people that they can't see everything that is wrong with others who, say, are in the hospital, like for an operation - we might not be able to SEE their insides!
I mean, we don't tell people who are in the hospital to leave because you look fine! That analogy seems to satisfy some.
I guess it depends if you have something to lose, like if it might hurt your relationships at work - then you might want to keep it more to yourself to manage.
But if we don't have anything to lose, then hey, I educate people. I think about their welfare, knowing full well what's potentially in store for them and their pets, etc.
I've gotten pretty good at it now, and can get through fast, depending on who I'm talking to.
I keep it simple, and give people information they can picture. It doesn't have to be about us - it can be about the larger picture.
First, I say it's a bacterial infection, kinda like syphilis, and I physically demonstrate the curvy wavy line of a spirokete.
I explain that it is the most complex bacterium on the planet, that it can travel through any tissues, that it infects the brain early on and so impacts all body systems,
that symptoms are usually confusing and head-to-toe that people cannot figure out, and that there are also other co-infections too that can add to the mix of symptoms.
I explain that it's mostly spread by infected ticks on vegetation, wood and animals; that birds can land a tick anywhere, and have, all over the world now; that people tick-drag areas and analyze the percentage of infected ticks in an area
And that means "I can give you the general stats for YOUR chances of catching any of this in XX area" and I start getting personal, as in "you, your family, your pets, your friends and acquaintances, etc can get this anywhere. If you do, it will be very challenging to deal with, may bankrupt you if not caught early," etc
By then, people are usually starting to get a little worried and start asking me questions. At that point, I shut up and let them lead with their questions because now I've got them thinking and concerned.
I usually end up explaining how to protect people, pets and the environment as best we can, and to come here and get doctor referrals if it happens.
In short, my response to your question is, first, can you afford to discuss the situation without it backfiring on you, and then if so, then to take charge and use the situation as an opportunity to educate the still-clueless public.
And going a little further, since you asked about letting people you know about it, I first keep it really simple, like say I have a bacterial infection and I have to manage my life because of it.
If they say "well, you look fine," or whatever they say that isn't accurate for us but is their perception, I often just acknowledge their experience by saying, "yeah, I can see how you would think that."
I don't make them wrong, and that strategy tends to relax people because they see that I'm open to understanding their point of view.
I have noticed that when I let them know I understand how they could be thinking that, that then they get more interested in understanding where I'm coming from, like I'm a friendlier person to deal with.
You can practice some of these strategies and watch how people respond.
One more thought - we really are different from people who haven't been stopped by something in life - they have a hard time comprehending.
I remember once when someone I knew got Lymed and called me up and asked, "How do you do this?" Because they had no experience in dealing with symptoms like we've had to deal with.
So the public really doesn't understand, and we need to understand that and give them some room to take in what we're saying.
I also try to put communication in a way that someone can understand. For example, I once had a guy in military fatigues asking me why I was lying down.
I quickly thought how to answer him, and remembered what I had read about US military bases. So I told him I had Lyme disease, a bacterial infection transmitted to me by an infected tick bite,
and was he aware that US military bases had been rated between 1983-1996 for low, medium and high risk of infected ticks? He said no and crouched down to learn more! Got him in 10 seconds! lol -