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do you tell your friends you have lyme?

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Posted 2/12/2013 2:45 AM (GMT 0)
just curious...
and if so what do you say?
and how?

especially if you are semifunctional.

i am a newbie. i think my friends would look at me like i am from Mars. They know i have health problems that are strange but i don't think they could process the unfathomable. even my partner is just coming around to saying... maybe we ought to consider this...

i've told a few people and they are like, ok, i just hope you get better. but beyond that, no.
<grin>
Posted 2/12/2013 2:49 AM (GMT 0)
Only ones I know REALLY well. Most do not understand it. They think it's no big deal, I'm a hypochondriac and Lyme is easily cured with a short course of doxy. They buy into the IDSA mainstream way of thinking about it and they think I'm fanatical for leaning toward ILADS views.

I find that unless people have a personal vested interest in Lyme because they or a member of their family have it, they really don't care or believe that it's a serious thing.
Posted 2/12/2013 3:01 AM (GMT 0)
im with summer. Honestly I haven't even told anyone in my family just my husband and his family. My boss told people in my cubby and this one woman was like oh I had it twice and it was terrible I just felt so tired. 28 days of doxy is all she needed. I told her that I've had it for years so it is probably late stage.

Post Edited (opugirl) : 2/11/2013 8:04:58 PM (GMT-7)

Posted 2/12/2013 11:59 AM (GMT 0)

Some people know and some of these, ever since they know, are behaving so indifferent that I'm having difficulties still seeing them as friends.

My boss knows, he understands I'm having a really difficult time. I'm really thankfull to him for his understanding!

My dad, his girlfriend and my sister know - my sister understands (she has fibromyalgia, maybe bartonella, not sure yet), my dad is too sensitive to talk about it, even asking how I'm doing seems very difficult to him (I think in a crazy way he feels responsable, don't know what's going on - when I'm answering him, he quickly changes subjects), his girlfriend doesn't 'believe' in this disease.

One friend is a severe diabetic, and she understands all about being too tired to live (so to speak), another one is always really interested in how I'm doing, she's just so sweet (she always asks when I'm seeing my dr, I thinks she notes it down somewhere, and then she always asks how it went).

There's other people I just want to scratch their eyes out, they just don't have a clue... I try not to talk to many people about it: Lyme/Bartonella is very much unknown over here.
Sometimes I just need to give some information, cause I'm so withdrawn from social life right now. I've started not to care about the fact that some people just can't hide taht they're thinking that I'm posing.

Posted 2/12/2013 2:48 PM (GMT 0)
I've actually started telling my friends. It kind of gives you a good idea of who your friends really are! There's a couple reasons I tell them. One, I've been called a hypochondriac for years. So, it's kind of like my way of saying, "told you so", lol :) I know it sounds immature, but for years I was a bartender/bar manager. We'd have drinks after work often. I rarely missed work (even on the days I felt horrible), but if I did miss, everyone would say, "oh she's just hungover". To which I would say, "if I missed work over a hangover I'd never be here!" Ha! It sounds bad, I know, but at the time I didn't know I had lyme. I thought I was just prone to the flu or something. If I had known I certainly wouldn't have been drinking! It also sounds bad that I ever drank that much, but as a bartender, it's just kind of the "norm".

Two, I warn them that if they ask me to go to lunch or make any kind of plans there's a good chance I might not make it. For a couple years I just stopped making plans altogether, and lost pretty much all of my friends. Now I just explain, I have some good days, but because of my health problems there are a lot of days I simply can't get out.

I figure, they can take it or leave it! I do my best to explain to them why it's harder than the mainstream info makes it sound, but I usually just tell them to watch "Under Our Skin" if they have time. I think it's something everyone should watch, a real eye opener. Most of them haven't watched, but a few have. Those that have are very understanding.

What I'm so tired of hearing is, "Thank goodness it's 'just' Lyme". Yeah, sure, I guess it could be worse. but honestly, those people have NO clue! Grrr...

It gets easier. I definitely think in the process of getting diagnosed (it took years for me), people started to think I was just exaggerating, going crazy, etc. If nothing else, having a diagnosis from my LLMD has given me more "confidence". I feel like I'm "allowed" to just be sick on my bad days, and in a weird way, that's a good feeling! :)
Posted 2/12/2013 5:24 PM (GMT 0)
I tell everyone - I refuse to hide, but I have very little to loose too! I haven't been able to work in over 30 years, so no worries about what my Boss would say!

I figure if we don't get the word out that it's not only in our area, how are we going to educate people to understand that if they have all of these odd symptoms and/or have that odd, bulls eye rash, that they need a very specific treatment and 10 days of Doxy isn't going to do anything but send it into a chronic infection.

There is so much disinformation out there about Lyme and the co-infections, that I'm doing all I can to get good, solid information out there as well.

But...that's just my two cents!! smilewinkgrin
Posted 2/12/2013 5:28 PM (GMT 0)
I think you must be right Traveler...

not talking about it will not solve the ignorance...
Posted 2/12/2013 5:30 PM (GMT 0)
Well, it's something to think long and hard on. It's different for each of us, I suspect.
Posted 2/13/2013 7:57 PM (GMT 0)
I am starting to tell people too and you get surprises from some and disappointment from others but I think we have to get the word out and I think it is an explanation as to why I am not being as social, etc. but each to his own. I know some people just think I'm crazy but I don't really care!
Posted 2/13/2013 8:31 PM (GMT 0)
You truly find out who is in your corner when you're sick. I have a couple of friends that I think are freaked out and they keep telling me to move back home to NY and live with my grandmother and sister. My grandmother is 88 years old. Ummm hello! I'm not going to burden her. Others I have told are so faithful and confident that I'm going to get better. They don't freak out, they are sweet and come by to help me when I need it. But I'm finding out you have to be careful. The last thing any of us need is stress and anxiety around us.

My boss is great about this...she really is. I got a little rocky after a meeting and she walked me back holding me. Wow.

All that being said just be careful as to who you tell and as disheartening as it is there are some that just don't need to know because they won't care, they will freak out or some people are afraid of sick people and won't want to come near you. I've experienced it all in this short period of time. I know when I feel all the way better (because that day is coming) who will be in my circle of friends. A few I just can't have close to me any more. It hurts but it's real.
Posted 2/13/2013 8:35 PM (GMT 0)
I had some pretty 'good' reactions this weekend - that and Traveler suggesting we should get the word out (which is logical) made me rethink things...
I was seeing friends I haven't seen in years, my ex boyfriend was really concerned, not acting as if I'm crazy cause he knows me, he knows my past (cancer when I was younger), he just knows I'm not a poser and that I'm a strong woman. Another friend was asking why we didn't have children yet, since it took her 5 years to get pregnant she was asking which treatments I was undergoing to get pregnant, so I briefly told her what's going on, she was really concerned and seemed to know the seriousness of these thick borne diseases. It felt really nice...
Posted 2/13/2013 11:00 PM (GMT 0)
Yep, I told everyone!  And I found out who my "true" friends were by doing so.

What I found amazing is even though my "true" friends didn't understand it, later on when I became better, they knew someone or had a family member who contracted lyme and called me up asking me lots of questions because they didn't know anything about lyme!

So spread the word and if you get a negative response, that person is not your friend.

Just my thoughts,

Denise

Posted 2/14/2013 3:10 AM (GMT 0)
Yes,I tell friends. I think people need to know that this disease exists and I also tell them because I frequently don't make plans or have to cancel plans that I do make. I want to make sure they know ahead of time that I try to be dependable, but can't be a lot of the time.
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